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Indian Journal of Palliative Care logoLink to Indian Journal of Palliative Care
. 2018 Apr-Jun;24(2):228–282.

Poster Presentation Abstracts

PMCID: PMC5915892
Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 2: EFFECT OF PREGABALIN ON INCIDENCE OF CHRONIC POST MASTECTOMY PAIN SYNDROME: PROSPECTIVE RANDOMIZED PILOT STUDY

Saurabh Vig 1, Vinod Kumar 1, Nishkarsh Gupta 1, Rakesh Garg 1, Sachidanand Jee Bharati 1, Seema Mishra 1, Sushma Bhatnagar 1

Introduction: Chronic pain after breast surgeries is a well-known entity,[1] and is known to decrease quality of life and effect personal and professional life of patients

Objective: To evaluate the effect of perioperative oral pregabalin on incidence of chronic post mastectomy pain syndrome (at 3 months post operatively).

Methods: After obtaining institutional ethical committee clearance, a pilot study was conducted in patients undergoing modified radical mastectomy. 50 patients (25 patients were randomly allocated to each group) were included. The target sample size of the study is 100 and the study is under process. These results are part of interim analysis. Pregabalin group received 75 md pregabalin B.D for one week starting from the morning of surgery in addition to standard multimodal analgesic therapy. Control group received standard multimodal analgesic therapy. Intraoperative and post-operative analgesia was standardized and fixed in both groups. Patients were followed up at 3 months post operatively. The following parameters were assessed - pain if any at rest and on 90 degree abduction. Location of pain (surgical site/ipsilateral arm/ shoulder). NRS 0-10, was used to assess the intensity of pain. Presence of any phantom sensation or phantom pain in the surgical area.

Results: Number of patients having chronic post mastectomy pain at 3 months after surgery were comparable in both groups (54.5% in pregabalin group and 56.5% in control group, p > 0.05). A specific site of pain could not be isolated in both groups and nature of pain was mainly neuropathic. A significant number of patients having chronic pain in the control group had an NRS > 4 when compared to patients having chronic pain in pregabalin group.

Discussion: Use of pregabalin in the perioperative period may not decrease the incidence of post mastectectomy pain syndrome but may reduce its severity and improve quality of life for the patient.

REFERENCES

  1. Jung BF, Ahrendt GM, Oaklander AL, Dworkin RH. Neuropathic pain following breast cancer surgery: Proposed classification and research update. Pain 2003;104:1-3.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 3: A RAY OF HOPE: HOMOEOPATHY FOR PANCREATIC CANCER

Smitha KV 1

Background: Many cancer patients seek homoeopathy as complementary therapy for cancer. Systematic study is now in trend regarding the benefit of homoeopathic treatment for the benefit of cancer patients.

Introduction: The incidence and mortality rate of pancreatic cancer is almost equal throughout the world. As per the GLOBOCAN2012 studies, the incidence and mortality rate of men in developed countries is 8.6 and 8.3 and in developing countries it is 5.9 and 5.5 respectively. So this is a humble effort to show what homoeopathy could offer to the suffering humanity.

Objectives: To study the scope and effectiveness of homoeopathic medicine in stage 4 diseases.

Methods: It is a clinical study on all age and both sexes, two differently treated cohorts are observed and studied – one with patients treated under complementary homoeopathic treatment. The second with conventionally treated patients. Medicines are selected after detailed case taking and suitable homoeopathic medicines were given at suitable intervals, through strict individualizations.

Results: In our clinical study, we observed an improvement of quality of life (ECOG 1 and ECOG 2) as well as a tendency of fatigue symptoms to decrease in cancer patients.

Conclusion: A developing country like India needs a cost effective treatment for chronic disease like cancer. This could be provided by homoeopathic medication and supportive management. It is simple to administer and is without any side effects, and the efficacy is proven through clinical cases.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 5: PREVALENCE OF NEUROPATHIC CANCER PAIN AND ITS IMPACT ON QUALITY OF LIFE IN PALLIATIVE CARE SETUP AT TERTIARY CARE CENTRE: AN OBSERVATIONAL STUDY

Raghav Gupta 1, Nishkarsh Gupta 1, Sachidanand Jee Bharati 1, Rakesh Garg 1, Vinod Kumar 1, Seema Mishra 1, Sushma Bhatnagar 1

Context: Neuropathic cancer pain (NCP) is difficult to diagnose and treat and is associated with severe comorbidities and sleep disturbances, poorer physical, cognitive, social functioning and greater impact on daily living.

Aims: To determine the prevalence of NCP, patterns of its management and the association of NCP with quality of life (QOL).

Settings and Design: An observational study was performed in adult patients aged more than 18 years diagnosed with cancer over the period of six months from October 2017 at Dr. B.R.AIRCH, AIIMS, New Delhi.

Materials and Methods: Presence of NCP was determined using DN4 questionnaire and pain characteristics were evaluated using Brief Pain Inventory-Short Form (BPI-SF). The associations between NCP, pain severity and health related quality of life (QOL) (using EuroQOL five dimensions EQ-5D) was analyzed using univariate and multivariate regression analysis.

Results: Prevalence of NCP was found to be 37% and was significantly lower among patients who had received (29.2% versus 51.4%, p < 0.05). Adjuvant analgesics targeting NCP were prescribed more frequently (54%) in these patients. Patients with NCP had higher pain severity score and pain interference score in their daily living (P < 0.001) but quality of life as measured by EQ-5D was not significant. Patients with longer duration of disease (P = 0.001), stage IV cancers (P = 0.005), inoperable cancers (P = 0.006) and comorbidity (P = 0.002) had worse quality of life. In addition the patients who did not receive chemotherapy (P < 0.001) had worse QOL. Patients who were managed with adjuvant analgesics had less interference with their daily living (P < 0.001) and had better QOL (P < 0.001).

Conclusions: Neuropathic cancer pain has a clear association with increased pain severity and pain interference in daily routine activities. Use of adjuvant analgesics improves pain control and quality of life.

Keywords: Neuropathic cancer pain; observational study; palliative care setup; prevalence; quality of life

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 6: A SURVEY OF KNOWLEDGE, ATTITUDE, PERCEPTION REGARDING MORPHINE USE IN CANCER PATIENTS

Rohini Dattatri 1, Vishnu Garg 1, Seema Mishra 1, Sushma Bhatnagar 1

Introduction: Pain is one of the most feared and distressing symptom in cancer. Around 30% - 50% of cancer patients experience moderate to severe pain. Pain has a negative impact on the quality of life of these patients. Hence, adequate pain management is essential. Morphine is an integral part of cancer pain management and is regarded as the “gold standard” treatment because of its multiple routes of administration, easy titrability, reliability and effectiveness in all types of pain. But it is not devoid of side effects. It can cause troublesome side effects like nausea, vomiting, constipation, sedation and also has an abuse potential. Hence it is a ‘double edged sword”. Striking a balance between adequate pain control as well as minimising side effects and preventing misuse is essential. The perceptions and attitudes of the patients about morphine can influence the compliance. Educating the patients about morphine when they are being prescribed for the first time helps to improve the compliance as well reduce the misuse. In our centre, we do it by providing a factsheet and explaining verbally. With this background, we conducted a survey to study the knowledge, attitudes and perception regarding the morphine use as there is paucity of literature regarding Indian population. This would help in identifying lacunae and also provides scope for further improvement.

Materials and Methods: All patients attending the outpatient department of our hospital and who were on oral morphine for atleast 1 month were included in the study. Questionnaire based survey containing closed ended dichotomous questions (yes/no).

  • Questionnaire directed towards 3 major domains

    Knowledge –18 questions; Attitude- 3 questions; Perception -11 questions.

  • Inclusion criterion - All adult cancer patients (>18 yrs) on T.morphine for atleast 1 month and attending Palliative medicine OPD at IRCH, AIIMS

  • Exclusion criterion - refusal to participate.

Results:

1a. Age –Mean age 45.7±12.8

1b. Sex – M:F: 31:19

1c. Education – Illiterates - 16%; Primary school – 30%; Secondary school – 36%; Graduates - 18%. The results have been further detailed in Table 1–3.

Table 1.

Issues with more awareness

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Table 3.

Domains

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Table 2.

Issues with least awareness

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Discussion: The study was done from Jan 2018 to Feb 2018 and is still ongoing. Published literature is replete with reports of negative attitudes, fear of addiction and association with end of life in the patient population. A study by Furlan Cella found that although the prevalence of pain in cancer patients was as high as 50.3%, 19.2% of patients would refuse morphine for pain control due to the fear of dependence.[1] 67.8% patients perceived that morphine directly contributes to worsening the condition. Reid et al., found that participants refused to take morphine for pain relief as they felt that it is used for the comfort measure for the dying patients.[2] The patients in our study were from various educational background but surprisingly no correlation was found between this and the knowledge, atttitudes and perception regarding morphine in cancer care. Although knowledge regarding morphine use and disuse was not upto the mark, no negative perceptions were seen. There was some negative attitude but majority of patients were comfortable in using morphine.

Conclusion: We conclude that we need to focus more on creating awareness about role of morphine in cancer pain as well as educate them regarding proper usage. Although its being done in our institiute, more efforts are needed for positive re-inforcement needed given the educational background of the patient population we cater to as well as the mental state of cancer patients. “Knowledge is power”.

REFERENCES

  1. Furlan Cella I. Prevalence of opiophobia in cancer pain treatment. Rev Dor São Paulo 2016;17:245-7.

  2. Reid CM, Gooberman-Hill R, Hanks GW. Opioid analgesics for cancer pain: Symptom control for the living or comfort for the dying? A qualitative study to investigate the factors influencing the decision to accept morphine for pain caused by cancer. Ann Oncol 2008;19:44-8.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 7: PULSED RFA OF SPHENOPALATINE GANGLION FOR FACIAL PAIN IN CANCER RELATED PAIN: A PROSPECTIVE STUDY

Avinash Bundiwal 1, Shiv Pratap Singh Rana 1, Sangeeta Singh 1

Introduction: Pain is present in up to 80% of patients with cancer of the head and neck Pulsed radiofrequency ablation (PRFA) is relatively new use of an older procedure, conventional thermal radiofrequency.

Aim of the Study: This study was designed to analyze the effectiveness of PRFA of Sphenopalatine ganglion for severe pain in the orofacial region in advanced head and neck cancer pain patients on oral morphine or fentanyl patch with or without adjuvant and to assess the Quality of life before and after radiofrequency ablation.

Materials and Methods: 20 consecutive consenting patients of advanced head and neck cancer (stage IV) were enrolled into the study and were divided into two equal groups of 10 patients each. One group received pulsed radiofrequency (Group P) after a positive diagnostic block and other group was given a diagnostic block followed by alcohol neurolysis (Group A). The pain intensity, percentage of pain relief, analgesic consumption, breakthrough pain, changes of any medication, side effects were recorded in each visits.

Results: Pain score (VRS) decreased in both the groups but statistically significantly in PRFA group (Group P) on 2nd day onward (1.4 vs 2.1 at 1week, 2.2 vs 2.6 at 1 month, 1.8 vs 2.8 at 3 month and 2.6 vs 3.1 at 6 month. All the patients experienced relief of pain and found to be statistically significant (P value < 0.05). Analgesic consumption was decreased in both the groups. The Karnofsky score improved from the baseline of 60 to 90 subsequently in both groups.

Conclusion: Pulse Radio Frequency ablation and alcohol neurolysis of Sphenopalatine ganglion can be done for effective management of cancer facial pain.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 8: PSYCHO-ONCOLOGY CARE THROUGH SUDARSHAN KRIYA: CASE OF SNEHANCHAL PALLIATIVE CARE, NAGPUR

Shilpali Bhalerao 1

Introduction: Sudarshan Kriya incorporates specific natural rhythms of the breath which harmonize the body, mind and emotions. This unique breathing technique eliminates stress, fatigue and negative emotions such as anger, frustration and depression, leaving you calm yet energized, focused yet relaxed. Sudarshan Kriya harmonizes the whole system by cleansing daily and accumulated stress. Studies show that Prolactin - a well-being hormone - significantly increases from the very first session of Sudarshan Kriya.

Objectives:

  1. To evaluate the impact of Sudarshan kriya on-going curative cancer patients

  2. To evaluate the impact of Sudarshan kriya on cancer survivors

  3. To study the possibility of using Sudarshan kriya as one of the interventions for palliative care.

Hypotheses:

Ho1: Sudarshan kriya doesn’t impact on the psychological well-being of cancer patients.

Ho2: Sudarshan kriya doesn’t impact on the spiritual quotient of the cancer patients.

Research Method: The current study adopts an experimental approach to evaluate the impact of Sudarshan kriya on psychological well-being and spiritual quotient of cancer patients. This study uses two sets of samples.

  1. Cancer patients with on-going curative treatment. - 15

  2. The Cancer survivors. – 20

  3. Physicians - 03.

Dependent sample (before-after) analysis is carried here using t-test. Tools of the data collection:

  1. Structured questionnaire for measuring Psychological well-being and spiritual quotient

  2. Observation

  3. In-depth Interviews.

Results: pilot study results suggest that there is significant impact of Sudarshan kriya (and knowledge practiced as per the schedule of happiness program) on both psychological well-being and spiritual quotient of cancer patients.

Conclusion: Since most of the researchers conducted on Sudarshan kriya suggest positive impacts on reducing pains of all kinds, a specific research on Cancer patients was much warranted. The results of the current research suggests that Sudarshan kriya and knowledge module as used in the happiness program can be used as an important intervention in all palliative units across India in standardized form.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 9: ASSESSMENT OF RISK FACTORS ASSOCIATED WITH INCREASED SUICIDAL TENDENCY IN TERMINALLY ILL CANCER PATIENTS IN A TERTIARY CANCER HOSPITAL IN EASTERN INDIA

S Das 1, R Roy 1

Introduction: It has been observed that although the number of cancer patients committing suicide may be relatively less but they are always at an increased risk of doing so (Breitbart et al.,). As there is lack of good Indian data regarding the suicidal tendencies in terminal cancer patients, this study was conducted to assess and evaluate the same in a tertiary cancer hospital in East India.

Objective: To identify possible risk factors associated with increased suicidal thoughts in terminally ill cancer patients.

Methodology: 110 patients with solid tumours admitted in the Palliative Care ward of a tertiary care Cancer Institute were screened over a period of 9 months. Initial screening consisted of interview of patients (Rapport and conversation) and their caregivers and once there was an indication of suicidal thought a confirmatory test was performed with the following scales.

  1. Hospital Anxiety and Depression Scale (HAD Scale)

  2. Suicide Risk Assessment Scale, (Adapted from Becks Intent Scale)

  3. Scale for Suicide Ideation (SSI).

Results: 28 patients were positive responders with majority being head and neck cancer patients. Increased suicidal thoughts were strongly associated in males, associated symptoms including pain, fungating wound, bad smell, bleeding, loss of verbal communication, hopelessness, depression, isolation, anxiety, panic attack.

Conclusion: Patients with more than 2 factors have the highest suicidal risk and should be proactively managed with counseling and psychiatric consultation.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 10: STRESS AND COPING OF FEMALE AND MALE CAREGIVERS OF TERMINALLY ILL AND CURATIVE CANCER PATIENTS

S Das 1, R Roy 1, G Kumar 1

Objective: The aim of the present study was to assess the level of stress and coping responses (approach and avoidance coping responses) among female and male caregivers of (Terminally Ill Stage 4) Palliative cancer patient and Curative Cancer Patients.

Methods: A sample of female and male caregivers (N = 120) consisting of 60 female and male caregivers (30 working + 30 non working) for Terminally Ill cancer palliative and 60 female and male caregivers (30 working + 30 non working) for Curative Patients with age ranging from 40-60 were selected. The variable caregivers stress was assessed using Kingstone Caregiver Stress Scale (KCSS) by Hopkins and Kilik (2004) and coping was assessed using Coping Responses Inventory Adult (CRI –adult) by Rudolf H. Moos (1992).

Results: After collection of data mean, standard deviation and ANOVA were computed. The results revealed that the mean stress of caregivers of Palliative Cancer Patients (Terminally ill) were higher than that of the caregivers of curative cancer patients whereas approach coping was higher for caregivers of Curative Cancer Patients than caregivers of Palliative Terminally ill patients. The results also showed that the avoidance coping were higher among the caregivers of terminally ill patients than the caregivers of Curative ill patient.

Conclusion: The results thus indicates that stress and coping responses (Approach and Avoidance coping responses) of male and female caregivers varies in term of their patients type of illness (Palliative Terminally ill and Curative ill Patients).

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 11: THE ROLE OF DIET AND LIFE STYLE IN THE GENESIS AND TRAJECTORY OF CANCER – CAREGIVERS’ PERCEPTION

Ravindra B Ghooi 1, Vandana Khode 1

Introduction: Genesis of cancer is not due to a single factor, it is difficult to attribute the occurrence of the disease to any dietary or environmental factor. Yet caregivers and other healthcare team members often view the disease as a consequence of habits rather than a misfortune, this judgmental attitude erodes the quality of patient care.

Objective: To examine the perceptions of spouses of patients who are caregivers towards the cause and responsibility of occurrence of disease in their spouse patients.

Materials and Methods: The study was approved by the Ethics Committee, subjects were recruited after they provided a written informed consent. Forty spouses of patients with oral and lung cancer who were the primary care givers were included in the study. They were administered a questionnaire that was developed in house. Their responses were recorded and analysed.

Results: A significant number of spouses of cancer patients attribute the occurrence of the disease to the habits of the patients, and hold them responsible for the same. There is also anger towards the patient, for having jeopardized the life and well being of the family.

Conclusion: We chose patients of oral and lung cancer, since there is greater evidence that tobacco chewing and smoking has a stronger relationship with the disease. Their caregivers often feel that the disease is not due to misfortune, and hence have reduced sympathy for the patients. Such perceptions affect patient care and impede the delivery of high quality palliative care.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 12: THE IMPORTANCE OF PSYCH-ONCOLOGY IN THE HOSPITALS

D Bhoopathy 1, Girish M 1, Manjunath 1

Background: All cancer patients suffer from psychogenic pain caused by prolonged illness resulting in emotional disturbances, depression, fatigue, morbidity, Cognitive impairment and fear of death. The elderly cancer patients and surgical patients (brain tumor) need the help of the neuro therapist and pediatric patients needs pediatric psychologist to plan for their rehabilitation modules. The Sheethal pranayama technique gives comfort to the radiation and chemo therapy patients.

Aim: To make all oncology hospitals to assess the Mental Health of the cancer patients from the day one of their treatment and evaluated regularly, documented in the case sheet.

Objective: To bring inter disciplinary research and service between Neuro scientist, psychologist, psychiatrist and oncology researchers.

Methodology: 5 elderly cancer patients, 5 cancer survivors and 5 care takers were randomly selected and orally questioned about the need and necessity of the neuro psychologist and various other therapists under one roof. They were also questioned about the benefits of counseling, yoga and meditation.

Results: About 90% patients felt that due to their fragile condition, they need service under one roof. 80% cancer survivors feel the same way. Care takers also feel that this is convenient and time saving. About the benefits of counseling and therapy: all cancer and cancer caretakers felt about 60% relief. The survivors felt therapy fastened their recovery and the relapse fear, stress is reduced.

Conclusion: There is a dire need for integrating multidisplinary treatments/approaches to patient care under one roof for cancer patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 13: BENEFITS OF COLOUR BASED ACTIVITY AS A PART OF DIVERSIONAL THERAPY CALLED “RANG TARANG”

Simoni Binoy 1, Namrata Sharma 1

Introduction: This study aimed to explore the relationship between engagement with colour based creative expression and music to reduce stress and increase happiness levels in caregivers of cancer patients. This study aims to explore the impact of colour based activities on stress levels and happiness quotient among caregivers of Cancer patients and ensuring the well-being of caregivers and provide them relief from emotional and psychological stress.

Materials and Methods: The study was approved by the Institutional Ethics Committee. A professionally trained art therapist conducted and assisted in monitoring the sessions. Ten caregivers between the ages 18 to 70 years were consented and recruited. They underwent 8 sessions of colour therapy complemented with meditative live music for 90 minutes. The exercises comprised of self-expression, self-discovery and stress reduction with the use of colors. Stress levels and happiness index, were monitored using the distress thermometer and Oxford Happiness questionnaire

Results: The study revealed a drop in the stress levels and a rise in happiness index of caregivers, following the use of this therapy. Participants were more positive about their care giving and they could concentrate better on their day to day activities.

Conclusion: Diversion therapy is a known method to reduce stress and improve happiness index, yet the type of diversion activity that would achieve optimal effects is not well known. Use of colour therapy coupled with music achieves this, however there is need to involve care givers in this activity regularly, which could be a challenge in a palliative setting.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 14: BARRIERS FOR ADMISSION TO PALLIATIVE CARE IN-PATIENT UNIT IN HOME CARE PATIENTS

Prince John 1, Digambar Sathe 1

Introduction: Delivery of home care at the patients’ home would be an ideal goal, however admission to a specialized centre is often required in times of crises. Patients are often not keen to admission for a variety of reasons. This study explores the drivers and barriers for admission to the centre as in patients.

Objective: To examine the knowledge and attitude, about palliative care among patients; drivers and barriers to getting admitted in a centre of patients on home palliative care.

Materials and Methods: The study was approved by the Ethics Committee, subjects were recruited only after they provided a written informed consent. Forty patients on home care were administered a questionnaire that was developed in house. Their responses were recorded and analysed.

Results: Contrary to expectations there are stronger drivers than barriers for admission to palliative care centres. It is also observed that understanding of palliative care is good, patients are satisfied with the quality of care provided at home. Most however, agree that palliative care centres provide better symptoms control, and also support and training for caregivers.

Conclusion: Knowledge about palliative care is high among patients, and they choose to stay at home since they are satisfied with the care provided. The results are in fact a vindication of the quality of home care services provided. Eventually, all palliative care would be best provided at home and centres such as ours would only be used for management of crises.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 15: PSYCHOSOCIAL IMPACT OF BREAST CANCER IN HOME CARE PATIENTS

Jharna Rai 1, Pallika Choudhary 1

Introduction: Breast cancer is the commonest cancer in Indian women. These patients suffer from a number of psychosocial problems like poor self-image, uncertainty, helplessness, anger and fears, financial difficulties, social stigma and spiritual distress which affects their quality of life.

Objectives: The aim of this study was to explore the psychosocial impact of breast cancer on female patients in homecare.

Methods: Semi–structured interviews were conducted of ten women under homecare to find out the psychosocial impact of the disease on their personal and social life.

Women with breast cancer at different stages of treatment were selected.

Results: Data analysis showed that women diagnosed with breast cancer identified several factors that affected their personal and social lives.

The main factors were:

  1. Psychosocial distress of disease (Social stigma, Low self-image, fear of relapse of disease and death, family responsibilities, hope for cure, denial, helplessness, anger)

  2. Reactions of family members (shock, denial, hope, sadness, financial difficulties)

  3. Reactions of society (sympathy, isolation)

  4. Worries and uncertainty about the future

  5. Spiritual distress (why me?).

Conclusion: This study shows that the major concerns of breast cancer patients were fear of uncertainty, relapse of disease, side effects of treatments, financial constraints, shame and disfigurement. Prompt handling of such issues improves the quality of life of such patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 16: PSYCHOSOCIAL INTERVENTIONS TO REDUCE CARERS STRESS OF EOL CANCER PATIENTS

Priyadarshini Deo 1, Mahesh Menon 1, Rajesh Mistry 1

Introduction: Caregivers of Palliative patients experience negative psychological, physical, social and financial squeal. Depression rates between 12 and 59% and anxiety rates of between 30 and 50% have been reported. Family carers are commonly referred to as “hidden patients” and they may require support from health services. This service is provided by the psycho-oncology team of the centre for integrated oncology and palliative care in our institution.

Objective: The aim of the present study is to assess carers’ stress, when nursing their loved ones along with review of some of their psychosocial issues and measures taken to address them.

Methods: An audit of patients’ records was carried out by the palliative care department. Caregivers’ stress at KDAH was assessed using the Caregiver Burden Scale. Five such case studies were identified to highlight the role of psychological interventions.

Results: The study results of the three sections of the CB scale showed that before intervention burden was between severe to moderate (77 to 40), and post intervention came down to moderate to minimal (41 to 20). More than 80% carers were ready to ask for repeated professional help and benefitted from the same.

Conclusion: Stress among caregivers ultimately affects quality of care to the patient due to inadequate knowledge about care giving along with financial burden, physical and emotional stress. Psycho-social interventions are needed to help them strengthen this ability besides reducing their own distress.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 17: CONCERNS AND COPING STRATEGIES OF CAREGIVERS OF PATIENTS OF ADVANCED CARCINOMA OF GALL BLADDER

Shamali Poojary 1, Rutula Sonawane 1, Jayita Deodhar 1, Arunangshu Ghoshal 1, Anuja Damani 1, Naveen Salins 1, Maryann Muckaden 1

Introduction: Family caregivers of advanced cancer patients have a demanding responsibility and have distress and worries related to their patients, mainly prognostic and end of life issues. The aim of this study is to examine the number and types of concerns and coping strategies in family caregivers of patients with advanced gall bladder cancer referred to palliative care outpatient services in a tertiary care cancer centre.

Methods: This study is an observational retrospective analysis from medical chart reviews, filled routinely for preliminary assessment of patients with advanced gall bladder cancer newly referred to palliative care services at Tata Memorial Hospital, Mumbai from April to September 2017. Caregivers’ concerns and coping strategies were recorded from the patients’ charts.

Results: Among a total of 72 caregivers, 61 (84.7%) were men. 30 (41.7%) patients were cared by their sons. All knew diagnosis, 66 (91.7%) were aware of non-curability and prognosis. But, 47 (65.3%) were unwilling to disclose prognosis to patients. The most common concerns were patients’ current symptoms 43 (59.7%) and future treatment options 30 (41.7%). Other concerns were psychological and financial 8 (11.1%) each, social 7 (9.7%), and spiritual 4 (5.6%).

Acceptance was the most common coping strategy used by 46 (63.9%) of caregivers, followed by problem solving 28 (38.9%). Denial was present in only 5 (6.9%) of caregivers.

Conclusions: Most of the caregivers were aware of diagnosis and prognosis, but were unwilling to disclose it to patients due to concerns with symptoms and further treatment. Major coping strategy employed was acceptance.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 18: A REVIEW OF PAIN PROFILE AND NEEDS ASSESSMENT OF PATIENTS AT PAKH PALLIATIVE CARE UNIT

Reshma Suresh 1, Sandhya Rajhans 1, Tapan Saikia 1, Amit Ghanekar 1, Kranti Rayamane 1, Adwait Gore 1

Introduction: Palliative care goes beyond physical symptom relief and it seeks to integrate physical, psychological, social and spiritual aspects of care. Thereby, it becomes necessary to learn and understand the patient's needs beyond symptom relief.

Prince Aly Khan Hospital, Mumbai is a leading tertiary care hospital in Mumbai, Maharashtra for Medical and Surgical Oncology. Hospital has a palliative care unit which offers a home based palliative care service to the needy patients.

Objectives:

  1. To review Pain profile of patients

  2. To understand and assess the other needs of patients.

Methods: During April 2016 to October 2017, 191 patients received services through PAKH palliative care center. A detailed history and needs assessment was performed in all patients through a structured format. Data was entered in excel sheet and analyzed. Pain was assessed using numeric rating scale, while other needs were assessed using semi structured tool.

Results:

  • 56 % patients were male while 44% patients were female

  • 74 % patients had pain. ( 23% mild, 43% moderate, 34% severe pain)

  • 91% patients had emotional needs

  • 77% patients had social and family issues

  • No statistical significant difference was observed between male and female for pain, emotional, social and family needs.

Conclusion: Emotional, Social and Family needs are equally or more important needs as that of pain, of patients of palliative care.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 19: PREVALANCE AND RISK FACTORS OF COGNITIVE DYSFUNCTION IN ADVANCED CANCER PATIENTS ADMITTED IN PALLIATIVE CARE UNIT

Deepti Ahuja 1, Sachidanand Jee Bharati 1, Nishkarsh Gupta 1, Vinod Kumar 1, Rakesh Garg 1, Seema Mishra 1, Sushma Bhatnagar 1, MA Khan 1

Background: Cancer is one of the most common causes of morbidity and mortality worldwide. Cognitive dysfunction is common in patients with cancer. Different prevalence rates ranging from 8-85% have been reported in studies done earlier. Multiple factors that may be disease related (brain metastasis, metabolic disturbances etc.), cancer treatment-related (concomitant chemoradiation, hormonal therapy, interferon alfa, glucocorticoids, opioids) or unrelated to cancer trajectory (old age, poor cognitive reserve, genetic) have been found to be associated with the poor cognitive function in cancer patients.[1]

Objectives:

  1. To estimate the prevalance of cognitive dysfunction in patients with advanced cancer admitted in palliative care unit

  2. To find risk factors associated with occurrence of cognitive dysfunction in patients with advanced cancer.

Methods: After obtaining approval from Institutional Ethics Committee, a prospective cross-sectional study was done on 64 advanced cancer patients of age group 18-75 years of either sex, requiring management of various symptoms that couldn’t be managed on outpatient basis and were admitted in Palliative care ward, Dr BRA IRCH AIIMS. After admission, the immediate management of symptoms was done as per protocol of our institution. Blood investigations were sent. Written informed consent was taken from the patients. Exclusion criteria for the study were patient refusal, presence of co-morbidities that may impact cognitive performance, history of major psychiatric disorder or alcohol abuse, haematologic or coagulation abnormalities, renal or hepatic insufficiency and inability to understand and complete HMMSE. Patient characteristics including age, sex, illiterate/literate, primary tumor, metastatic sites, drug history, treatment history including previous surgery, chemotherapy and radiotherapy were noted. The cognitive assessment of patients was done using Hindi version of Mini-Mental State Examination (HMMSE) questionnaire.[2]

Results: After statistical analysis, the prevalance of cognitive dysfunction of varying severity was found in upto 36 % (Mild 21.88%, Moderate - 10.94%, Severe - 3.13%) of patients. Bivariate followed by multivariate analysis was done to detect relative contribution of the factors as shown in Table 1.

Table 1.

Risk factors associated with occurrence of cognitive dysfunction

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Conclusions: Cognitive dysfunction is common in advanced cancer patients admitted in palliative care unit. Prior administration of chemotherapy and poor educational status were found to be significantly associated with occurrence of cognitive dysfunction.

Keywords: Cognitive dysfunction; Hindi version of mini-mental state examination; palliative care

REFERENCES

  1. Vannorsdall TD. Cognitive changes related to cancer therapy. Med Clin North Am 2017;101:1115-34.

  2. Ganguli M, Ratcliff G, Chandra V, Sharma S, Gilby J, Pandav R, et al. Hindi version of the MMSE: The development of a cognitive screening instrument for a largely illiterate rural elderly population in India. Int J Geriatr Psychiatr. 1995;10:367-77.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 20: PERCEPTION OF INFORMAL CARE GIVERS ABOUT PALLIATIVE CARE OUTCOME AND THEIR CONCERN ABOUT SOCIAL SUPPORT

Arati Hota 1, Anjum S Khan Joad 1, Kulpreet Kaur 1

Introduction: In past few decades many efforts were made to reduce the length of hospital stay and involvement of informal caregiver in the care of patients. Aim is to shift from the institutional care to community care. Always their resource is not sufficient to meet the needs.

Objective: To find out the experience and understand the barriers/perception of asking informal support.

Method: Semi structured face to face interview, most of the questions are open ended. Caregivers were selected on the basis of inclusion criteria. This is qualitative data only focused on the analysis of 20 interviews of caregivers. Participants were informed that the interview is purely voluntary and all the identifying data of participants will be confidential.

Results:

  1. Majority of the caregiver have not discussed about the disease status and prognosis with the patient

  2. Some of them feel that some treatment procedures make the patient stigmatized. Home is the preferred place for care

  3. Most feel that palliative care is only symptoms control, some feel curative therapy

  4. Most respondents never asked for informal social support though most of them experience emotional distress.

Conclusion: Caregivers emotional support is important and should be a part of treatment. Discussion of disease prognosis among family members is inadequate and may be a source of emotional distress in both patients and ICG.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 21: FAMILY MEETINGS IN PALLIATIVE CARE: A CASE STUDY

Michelle Normen 1, Rajeshwari R 1

Introduction: Communication in palliative care is imperative to improve medical, psychological, and relational outcomes for patients and families. Discussions on end of life care with the patient and family can relieve anxiety and helps in ensuring that final wishes regarding ttreatment/care are honored. These family meetings can help surviving family members cope better during and through bereavement without feelings of guilt (Keeley, 2017). Structured family meeting procedures and guidelines suggest that these forums enhance family–patient–team communication in the palliative care setting.

Objectives: To understand the importance of family meetings in palliative care at a tertiary cancer centre.

Methods: Case study method.

Results/Case Report: This is a case report of a family of a 73 year old patient diagnosed with Sebaceous Carcinoma with metastasis. The family was referred as the communication about advancing disease and end-of-life-care caused extreme distress that resulted in poor communication between family members leading to poor decision making. Family meetings were used as a medium to improve communication within family members and healthcare team which resulted in reduced emotional distress, better communication and improved decision making during EOLC and through bereavement. The feedback received from the family highlighted the importance of family meetings.

Conclusion: Family meetings are a powerful tool which provides a therapeutic alliance to enhance the quality of care provided to palliative care patients and their family carers. Communication skills and conversational techniques guided meetings with cancer patient's families are useful to address distress and manage issues in everyday life.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 22: PREVALENCE AND PREDICTORS OF INSOMNIA IN CANCER PATIENTS PRESENTED TO PALLIATIVE CARE UNIT OF A TERTIARY CARE HOSPITAL IN INDIA

Rudranil Nandi 1, Seema Mishra 1, Sushma Bhatnagar 1

Introduction: Sleep is an essential factor for quality of life. Sleep disturbance is both a common occurrence and a neglected problem in cancer patients. These symptoms can lead to increased levels of distress and impairment in daytime functioning. Between 30% and 50% of newly diagnosed cancer patients report insomnia. Information regarding sleep disturbances in advanced cancer population is even poorer. It is estimated that 60–70% of advanced cancer patients have relevant sleep problems. The aim of this study was to assess the prevalence of sleep disturbances and possible correlations with associated factors.

Methods: Insomnia was measured using the 7-item Insomnia Severity Index (ISI). Psychological aspect of the patients was assessed by Mental Adjustment to Cancer (MAC) scale. A consecutive sample of patients with cancer presented to an palliative-supportive care unit for a period of 1 month was assessed.

Results: 86% of total patients were having problem of insomnia in our study. Across the world prevalence of sleep disturbances in cancer patients varies widely, ranging from as low as 24% to as high as 95%. In our study, female patients are more prone to insomnia than male. 72% of total patients showed poor fighting spirit. 72% of total patients were feeling helpless. 90% of total patients who were feeling helpless were having some form of insomnia. 40% of total patients were suffering from some form of anxiety. 100% of the anxious patients were having problem of insomnia. 28% of total patients had shown fatalistic attitude. We found female sex, young age, anxiety, helplessness, lack of fighting spirit as risk factors of insomnia.

Conclusion: Insomnia is a potential but neglected problem in cancer patients. Patients with above mentioned risk factors should be evaluated properly to improve their quality of life.

Keywords: Anxiety; cancer, insomnia; sleep; mental adjustment

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 24: A RAY OF HOPE AND SUPPORTING EDUCATION FOR BEREAVED CHILDREN

Ramu Kandasamy 1, Rosemund Sr 1, John Lunn 1, Reena George 1

Introduction: For many patients, at the end of life needs of their family are even more important than their own physical symptoms.

Objectives:

  1. To prevent a cycle of poverty when the breadwinner dies leaving young children

  2. To foster hope during a terminal illness.

Methods: The social worker tries to understand the needs, goals and strengths of the individual while planning educational Rehabilitation for the children. He then accesses appropriate support.

Results: Examples of children from one room huts who have become respected professionals will be illustrated. Learning points from unsuccessful examples will also be discussed.

Conclusion: The child's motivation, the family's support and the social worker's ability to network are all crucial for good outcomes in educational rehabilitation.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 25: POSSIBILITIES FOR COLLABORATION BETWEEN PHYSICAL MEDICINE AND PALLIATIVE MEDICINE FOR CARE OF TERMINALLY ILL PATIENTS IN INDIA: A PERSONAL PERSPECTIVE

Abhinav Singh 1

Introduction: A strong multidisciplinary approach is core to palliative care. Palliative care outcomes are mainly due to the contributions of the palliative care team, with contributions from other specialities. In India, physical medicine is one of the least utilised specialities for palliative care, which on optimal use can complement in improving quality of life. Psychiatrist can play unique role through their valuable contribution, by focussing on the functional implications that symptoms present. Symptoms such as neurological deficit, muscle weakness, fatigue, urinary incontinence leading to dependence for activity of daily living and other functional activities are challenges for both team. But proper collaboration between two specialities will help improve quality of patient care.

Objectives: Possibilities for collaboration of Physical medicine with Palliative medicine for care of terminally ill patients in India: a personal perspective.

Methods: The aim of this study is to make review of work of physiatrists in improvement of quality of life and activities of daily living and explore possibilities for implementation in palliative care in India.

Conclusions: In spite of possibilities of integrated approach physical medicine is one of the underutilised specialities for palliative care in India. During management of palliative patients, there are many modifiable and preventable physical symptoms like muscle atrophy, weakness, pressure sores. Proper physical training, stimulation techniques along with assistive devices and gadgets can be used for improving activities of daily living and ultimately quality of life. Although two distinct specialities, still palliative physicians and physiatrists share common traits of symptomatic care for patients suffering from incurable diseases which if optimally collaborated will improve quality of life.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 26: RESOURCE MOBILIZATION FOR CANCER PATIENTS

Rajvinder Kaur 1, Reena Sharma 1

Introduction: One million new patients are diagnosed with cancer in India every year and most pay for treatment out of pocket which they can ill-afford. Those having means to pay are often pushed into poverty, selling their assets for treatment. The government and certain NGOs provide financial and in-kind resources for these patients. However due to poor awareness they are often unable to utilize these resources.

Objectives:

  1. To detail various government and NGO schemes providing financial and in-kind resources to poor patients.

  2. To highlight the help CanSupport's social workers provide to cancer patients through these schemes.

Methodology: CanSupport's social workers help cancer patients avail resources from government [Table 1] and NGOS

Table 1.

Financial aid

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In-kind Resources: A number of NGOs provide in-kind resources like free/subsidized investigations, chemotherapy, radiotherapy, prosthetic limbs and bras, crutches, wheelchairs, colostomy kits, etc.

Results: Resources mobilized by CanSupport's social workers:

  • Number of patients helped: 1092.

  • Government Schemes: Rs. 6.64 Cr.

  • In-kind from NGOs: Rs. 2.69 Cr.

Conclusions: Being able to avail of these resources helps mitigate some of the distress caused to patients by this disease.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 27: AVASCULAR NECROSIS OF HIP IN A PATIENT WITH BRAINSTEM GLIOMA IN PALLIATIVE CARE SETUP

Nilesh Kumar Karansing Valvi 1, Anuja Damani 1, Jayita Deodhar 1, Arunangshu Ghoshal 1, Naveen Salins 1, MaryAnn Muckaden 1

Introduction: AVN is often an overlooked complication of long-term steroid use in palliative care (PC), which affects quality of life (QoL) of patients, causing pain and immobility. We describe a case of bilateral non-traumatic AVN of hip joint.

Case Description: Mr. SB, 33-year-old gentleman, case of low-grade medullary glioma was on PC in view of residual disease post treatment. On follow-up, he had signs of raised intracranial pressure, for which he was started on corticosteroids, but could not be weaned off, as he remained symptomatic. After two years of follow up, he presented with pain in both hip joints, difficulty in hip flexion and internal rotation causing restriction in mobility for one month. X-ray suggested AVN of bilateral femoral heads–Ficat stage 5. After ruling out other causes, this was ascribed as a complication of long-term corticosteroid use. After initial refusal by two orthopedic surgeons, bilateral total hip replacement was performed as patient had otherwise good performance status. Mobility and pain improved post surgery; patient could perform his routine activities. This had huge impact on his QoL. Now, a year after surgery, patient remains to be stable and is planned for management of residual disease in the form of re-irradiation and Temozolamide.

Discussion: Vigilance about complications of long-term corticosteroid use can prevent morbidity. This case exemplifies that PC is not only limited to symptom management and end of life care, but also includes management of complications, which may need major interventions like surgery to improve QoL.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 28: EFFECT OF MANUAL THERAPY IN POSTOPERATIVE HEAD AND NECK CANCER PATIENTS: A PRE- POST EXPERIMENTAL STUDY

Rohit E Khanna 1, Renu Pattanshetty 1

Introduction: The burden of head and neck cancer in India has been increasing in recent years. Despite evidence that physical therapy exists throughout phases of treatment for head and neck cancer patients, combined treatment of manual therapy in the form of mobilization, muscle energy technique and soft tissue mobilization techniques are rarely available for clinical practice. Hence, the present study was taken up.

Objective: To study the effect of combined manual therapy in form of mobilization, Muscle energy technique and soft tissue mobilization on neck pain, quality of life, mobility in head and neck cancer patients.

Methods: A total of fifteen (15) subjects including eleven (11) males and four (4) females post operative head and neck cancer subjects were given combined manual therapy in the form of cervical mobilization, muscle energy technique and Soft tissue Mobilization for duration of a week during the hospitalisation phase. Pain was assessed using Numeric pain rating Scale, Range of motion of cervical joint, shoulder joint and Temporomandibular joint, Functional assessment was done using Neck disability index and FACT H and N Questionnaire.

Results: The study demonstrated improvement in all the outcome measures in the study, the significant difference was seen in with p ≤ 0.001 except cervical rotation and shoulder range of motion.

Conclusion: The study demonstrated Pain reduction, Improvement in Cervical, TMJ and shoulder range of motion, Improved Quality of life and reduction in disability following combined manual therapy approach.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 29: HIP PROTECTOR DEVICE: AN OBSERVATIONAL 12-MONTH STUDY OF COMPLIANCE AND EFFECTIVENESS AMONG PARTICIPANTS OF SENIOR CITIZEN HOUSING SOCIETY OF NATIONAL CAPITAL REGION, INDIA

Komal Kashyap 1, Sushma Bhatnagar 1, Naresh Bhatnagar 1

Introduction: In elderly, hip fracture is a major cause of disability, functional impairment and even death. Hip fractures are related to both falls and osteoporosis. The most common indicators of an imminent falls are gait abnormalities and imbalance. Fracture treatment is expensive and good preventive method is a hope of alleviating the huge social burden of hip fractures by a suitable design of a wearable device.

Objective: A new microcellular polymer based Hip Protection Device (HPD) is developed and patented at IIT Delhi. In order to assess the efficacy and efficiency of the developed device, this study was proposed with the following: 1. the compliance among the elderly Indian population in the National Capital Region (NCR), 2. Comfort and confidence level, 3. Fall incident and Acceptability by the target population.

Study Design: The study is based on free distribution to 75 elderly.

Methods: The study consisted of male and female above the age of 65 with or without hip fracture. All participants possessed high risk of fall.

Results: The study shows 73% used it during walking and 27% used at walk, home and during sleep also. Out of 75 subjects wearing the hip protective device, 4 fell down in a span of 12 months. Maximum number of participants i.e. 90% and above felt the use of new device comfortable and 97% compliance of its usage was reported. The participants level of confidence in walking improved and few who were afraid to walk in their room, started morning walks for 4-5 km a day wearing the device with a smile.15% of possible fractures were prevented by the device in a limited time study; this percentage of prevention can go up in long term study in further follow up.

Conclusions: Novel HPD of IIT Delhi is effective in reducing chances of hip fractures among the elderly and can be a cost effective solution of futuristic palliative care. The study shows confidence in the normal life and finally arrival of low cost, light weight hip protective device.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 30: AN OBSERVATIONAL STUDY TO ELUCIDATE THE REASONS FOR NON COMPLIANCE TO HOME TREATMENT FOR BREAST CANCER RELATED LYMPHEDEMA IN A TERTIARY CARE HOSPITAL

Sandeep Babbar 1, Nirmal Kumar 1, Sushma Bhatnagar 1

Lymphedema is chronic, debilitating condition with a variety of causes that restrict the flow of lymphatic fluid. There is no standardized patient education for breast cancer related Lymphedema or universal standardized evidence-based treatment protocol to manage the symptoms of breast cancer related Lymphedema. In Indian context with given social structure and the economic background. The study was designed to elaborate the reasons for non compliance in home treatment of breast cancer related lymphedema and thereby will provide effective improvement in the home treatment.

Adult patients with breast cancer related lymphedema with more than 3 month life expectancy were recruited for the study. Home exercise program was explained to the patients. A log book was given to record the daily exercise routine. After one month follow up reasons for non compliance to exercise program was noted.

Results: out of total 47 patients enrolled in the study, 26 patients were doing exercise, whereas 21 patients were non compliant to home exercise program.

  • 24.3% response was pain – reason for non compliance to home exercise program

  • Financial constrains were least suggested reason for non compliance.

Conclusion: adequate pain relief is must for compliance to home exercise

  • Family member involvement – attendant assigning

  • Motivation - to motivate the patients to perform the exercises regularly.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 31: EFFECTS OF PHYSIOTHERAPY ON NECK AND SHOULDER MOVEMENTS AND MOUTH OPENING IN PATIENTS OPERATED FOR HEAD AND NECK CANCER AND THEIR QUALITY OF LIFE: A PILOT STUDY

Priyanka Gandhi 1, Shveta Seth 1, Sushma Bhatnagar 1, Deo SVS 1

Introduction: Head and neck cancers constitute the majority of cases in developing country like India. Head and neck cancers include oral cancers, pharyngeal cancers, laryngeal cancers, salivary gland cancers, cancers involving the skin of head and neck region, etc. Treatment for head and neck cancer involves surgery, radiotherapy and chemotherapy.

Surgery followed by reconstruction has many acute and chronic complications. Chronic complications include shoulder pain/dysfunction, neck stiffness, edema, trismus, etc. Physiotherapy interventions are used to reduce the impact of surgery on the shoulder and include a wide range of rehabilitative techniques to improve strength, endurance and stretch of muscles.

Objectives:

  1. To assess the effectiveness of post operative exercises on shoulder, neck and jaw movements

  2. To assess the effect of exercises on quality of life in patients with oral cancer post surgery.

Methods:

Inclusion criteria:

  1. Age group 30-60 years

  2. Both male and female patients

  3. Patients with diagnosed oral cancer and posted for surgery

  4. All patients who are consented to be part of the study.

Exclusion criteria:

  1. Patients with cervical and shoulder injury

  2. Unwilling and uncooperative patients

  3. Uncontrolled hypertension and asthma

  4. Tracheostomised patients

  5. Metastatic disease.

Patients will be assessed pre operatively. Patients will be assessed on post operative day 3 and further follow up will be done on 1st, 4th and 8th week post operatively. Exercises will be taught to the patient pre operatively. After the surgery the patients will be visited on 3rd post operative day. Once the patients get discharged they will be taught exercises for the home. Patients will be instructed to maintain an exercise log table at home. After discharge patients will be followed up on OPD basis at the 1st, 4th and 8th week post operatively.

Results:

  • Neck dissections are associated with various post operative complications such as reduced shoulder and neck movements, decreased swallowing, reduced mouth opening and pain. Stretching and strengthening exercises are incorporated to improve ranges and strength

  • Shoulder flexion and abduction are reduced in the immediate post operative phase. However with the use of stretching exercises these ranges have shown improvement and reached close to the pre operative values by the end of 8th week

  • Trismus is a common post operative complication symptom in head and neck cancer patients. An early exercise start is favorable in the treatment of radiation-related trismus. Studies have reported that the odds of improvement in mouth opening are reduced if time from oncological treatment is long

  • Swallowing is one of the most important oro-motor function which the patient looses. Though training swallowing to patients was not part of our protocol but we had taken it while scoring QLQ. The patients though improved with time they were simply taught to keep neck slightly extended and keep trying to swallow.

  • The tabulated results were collected and analyzed [Graph 1].

Graph 1.

Graph 1

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Pain, swallowing and speech

Conclusion: Early strengthening and stretching exercises to be started in order to gain mouth opening and Shoulder ROM.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 32: EFFECT OF PALLIATIVE BRONCHOSCOPIC INTERVENTIONS ON QUALITY OF LIFE OF PATIENTS WITH CENTRAL AIRWAY NARROWING: A RETROSPECTIVE REVIEW

Anuja Pandit 1, Nishkarsh Gupta 1, Vinod Kumar 1, Rakesh Garg 1, Sachidanand Jee Bharati 1, Karan Madan 1, Seema Mishra 1, Sushma Bhatnagar 1

Background: CAO is a late and potentially life threatening presentation of lung or mediastinal tumors and may require emergency diagnostic and therapeutic rigid bronchoscopic interventions to relieve the obstruction.

Aims: This study was conducted to determine whether bronchoscopic (rigid or fibreoptic) intervention (cryoprobe resection or coring of tumor mass, or stenting) reduced the symptom burden and need for continued mechanical ventilation in patients with acute respiratory failure from malignant or benign CAO.

Materials and Methods: The medical records of all patients with CAO necessitating hospitalization prior to referral for therapeutic bronchoscopy were retrospectively reviewed. Study duration: August, 2015 and July, 2017. The indications and procedures done were noted. VAS score for dyspnea and cough were noted during the preop and postop period.

Results: 227 patients required bronchoscopic interventions (Diagnostic, Therapeutic or Palliative). There were 105 patients with CAO (malignant conditions or benign inflammatory narrowing) which required bronchoscopic interventions (18 elective and 87 emergency). Interventions for CAO included mechanical core-out, laser or cryo debulking and recanalisation, dilation, electrocauterisation of tracheal webs, and stent placement (for TEF, tracheobronchial mass, mediastinal mass, stricture). The mean VAS score for dyspnea (from 7.8 to 3) and cough (from 6.7 to 3.2) were reduced after intervention. Bronchoscopic intervention allowed immediate discontinuation of mechanical ventilation in 42% (8/19) of patients and transfer out form ICU in 39.3% patients (13/33). There is clearly an immediate beneficial palliation of symptoms with bronchoscopic interventions in CAO. Also these may reduce the use of opioids to relieve dyspnea.

Conclusion: Palliative bronchoscopic interventions reduce patient suffering due to respiratory distress and may improve the quality of life. They allow withdrawal from mechanical ventilation and shifting of the patient to a lower level of care environment. These palliative interventions may be an effective alternative to conservative comfort measures in select tertiary care centers to reduce patient suffering and should not be withheld solely on their prognostic status. Further studies are required to objectively measure the effect of these interventions on quality of life and delaying mortality.

Keywords: Bronchoscopic interventions; CAO; cough; dysnoea

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 33: SUCCESSFUL USE OF BOTULINUM TOXIN A IN INTRACTABLE, SEVERE MUSCLE SPASMS IN SPINAL CORD INJURY: A CASE REPORT

Gautam D Modak 1, Madhuri A Lokapur 1, Vinaya R Kulkarni 1, Kalpana V Kelkar 1

Introduction: Botulinum toxin is produced by the anaerobic bacterium Clostridium botulinum, and causes flaccid paralysis by blocking acetylcholine. Best known for its beneficial role in facial aesthetics it is now being used for multiple non-cosmetic medical and surgical purposes. We report a rare and novel attempt of using Ultrasound guidance used for intramuscular botulinum toxin injection for treatment of painful muscular spasms in an operated case of meningomyelocele.

Case Report: A 25-year-old male came with the chief complaint of painful spasms and twitches in bilateral thighs exacerbated on lying down. He was diagnosed as a case of meningomyelocele and paraparesis at birth and operated multiple times. On examination-the patient was wheelchair bound; power was grade 2/5 in bilateral lower limbs with spasticity and exaggerated reflexes. Studies revealed severe chronic axon degeneration affecting predominantly bilateral L5, S1 and L2, L3 and L4 motor roots. Conservative treatment proved ineffective.

Management: Appropriate consent was taken. USG guided Intramuscular injection of Botulinum toxin 50 IU each in Vastus lateralis of bilateral lower limbs was performed. A week later there was complete resolution of spasms in the left lower limb with minor residual twitches present in the right lower limb. VAS score improved from a pre-procedure score of 8-9 to a post procedure score of 3-4.

Discussion: The reduction of muscle contracture obtained by BoNT-A or BoNT-B injections may explain the decrease in the pain. Moreover, BoNT-A has been found to inhibit bradykinins, serotonin, potassium, prostaglandin E2, substance P and the neuropeptide CGRP reducing sensitization of muscle nociceptors. In most cases, the BTX-A therapy is effective 2 or 3 days after the injection, and the maximum effect is observed after about 3 weeks. They last up to 3–4 months.

Conclusion: Painful spasms in bilateral paretic limbs in a patient operated for meningomyelocele were successfully managed by USG guided intramuscular injection of Botulinum toxin. We propose that Ultrasonography guidance might be an excellent technique for botulinum toxin injection in the treatment of chronic pain.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 34: DEVELOPING AN OPTIONAL ORIENTATION PROGRAM ON PALLIATIVE CARE FOR UNDERGRADUATE MEDICAL STUDENTS

Suguna Elayaperumal 1, Vinayagamoorthy V 1, Muruganandham R 1, Amol R Dongre 1

Introduction: We conduct training programs on palliative care for doctors, nurses and social workers. In response to the request from Student council, we developed an optional orientation program on palliative care for undergraduate medical students.

Objective: To describe the curriculum development process for an optional orientation program on palliative care for medical undergraduates at SMVMCH.

Methods: Following the Kern's steps in curriculum development, learning outcomes, content, teaching-learning methods and feedback mechanism were decided by a team of experts in the field of Palliative care, Nephrology and Community Medicine. The learning outcomes of the program were focused on students’ ability to appreciate patient's physical, social, psychological and spiritual problems. After exposure to the desired content through a sensitization and workshop, 24 volunteer students were given supervised hands-on communication exposure with admitted chronic kidney disease patients. Students’ were asked to identify patients’ physical, social, psychological and spiritual problems by using the structured formats. Each student had two interactions per week with a patient for one hour duration. Four trained mentors offered formative feedback on students’ assignments. As a part of programme evaluation, students’ and patients’ reactions to this new programme were obtained.

Results and Conclusion: We could develop the various components of curriculum for this programme and run its first iteration during the evening hours using the available resources. To some extent, students were able to identify physical and psycho-social problems of the patients. The students expressed that they learned how to approach a patient with chronic illness. Both student and patients seemed satisfied with the programme. Students’ suggestions were to dedicate protected time for patient interaction and to improve the feedback system.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 35: PATIENT'S DECISIONAL CONTROL PREFERENCES IN PALLIATIVE CARE: AN INDIAN SURVEY

Arunangshu Ghoshal 1, Anuja Damani 1, Jayita Deodhar 1, Naveen Salins 1, Muckaden MA 1

Introduction: The frequency of passive decisional control (patients prefers physician to make decisions) has been reported to be variable but generally larger among patients living in developing countries.

Objectives: This study aimed to determine the frequency of passive DCP among patients with advanced cancer in a tertiary cancer center, and identify its association with their socio-demographic and clinical characteristics.

Methods: 150 patients referred to palliative care underwent assessment of decisional control preferences using validated tools including Control Preference Scale tool, Satisfaction with Decision Scale and understanding of illness questionnaire. Information regarding patient characteristics including age, gender, education, marital status, employment, Karnofsky Performance Scale, cancer stage and type, religion were also collected. Descriptive statistics and Logistic regression analysis were performed.

Results: Median age was 48 years, Karnofsky 90, and 55.3% were men. Shared, Active (patient prefers to make decision by his/her own) and Passive DCP were 20.7%, 26.7% and 52.7% respectively (n = 150). 51.3 were satisfied by the way the actual decisions were made. 70.7% felt that their cancer was curable. Passive DCP did not vary across regions. Multivariate analysis shows that the passive DCP was significantly associated in better KPS [expB 1.07 (1.01-1.15), p = 0.03].

Conclusions: There are significant differences in DCP with KPS. Patients report high level of satisfaction with their treatment decision, though they have poor understanding of their prognosis and understand their treatment to be of curative intent. Individualized understanding DCP and focus on illness understanding may be important for quality care and patient satisfaction outcomes.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 36: “SANS PAIN” (STUDENTS AGAINST NEEDLESS SUFFERING AND PAIN): A MODEL PROJECT BY PALLIUM INDIA

Babu Abraham 1, Rajagopal R 1

Introduction: Pallium India is a nationally registered trust (Reg.No.693/IV/2003), based at Trivandrum, aiming an India in where palliative care is integrated in all health care so that every person has access to effective pain relief and quality palliative care along with disease–specific treatment and across the continuum of care. Pallium India is desirous of launching a project called ‘SANS Pain’ (Students Against Needless Suffering and Pain). Students are the back bone of the world that we live in, it is said that today's children are tomorrows citizen. They can change the face of needless suffering and pain. They can help by “Reverse awareness generation”, passing on the knowledge obtained to their elders, which is found to be equally or more effective. “SANS” French word which means “without”. Pallium India believes that students are right individuals to wipe out needless suffering for our country.

Objectives: Select the student volunteers to fight against needless suffering and pain. Use their talents to wipe out needless suffering from their locality. Creates future generation with value added life and fully socially committed.

Methods: ‘SANS Pain’ project consists of 3 phases. Phase 1- We select the students from various schools and colleges, conducts awareness programs, training programs arranges including home visits. Phase 2 - The selected groups are expected to take part in various actives like awareness programs, raising funds, identification of the people who need palliative care, phase 1 continues. Phase 3- These selected groups in the 3rd phase mend to spread the idea of sans-pain to the new groups that is selected in next year. Phase 1 and 2 continues.

Activities of “SANS-Pain”:

Campaign for palliative care:

  • Talk to your relatives

  • If there is a suffering person in your neighborhood, tell him about palliative care

  • Conduct awareness programs in other schools or clubs.

Raise funds:

  • Give up something

  • Take a collection

  • Conduct fund-raising events.

Improve awareness:

  • “Walk for pain relief”

  • “Sing” for palliative care.

Support patients:

  • Adopt a patient's

Outcomes:

  • The satisfaction of having helped a suffering human being

  • Valuable experience

  • Good backdrop for their career

  • Develop leadership qualities

  • Learn group work.

Conclusion: The concept of ‘SANS-Pain’ creates future generation with value added life and fully socially committed citizens for the nation with compassionate or empathetic mind.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 37: SOCIO-ECONOMIC STATUS AND DEMOGRAPHIC ASSESSMENT OF ADVANCED CANCER PATIENTS IN PALLIATIVE CARE DEPARTMENT OF A TERTIARY CARE CENTRE: OBSERVATIONAL STUDY

Panda N 1, Kumar G 1, Bhattacharjee G 1, Roy R 1

Introduction: Socioeconomic status (SES) comprises of not just gross income but also educational qualification, financial security and individual perceptions of social status and class. It has been observed that people with low SES have less access and utilization of palliative care services. With this background, this observational study was carried out at SGCCRI to assess and evaluate the SES of patients attending the palliative care department and analyses the major social concerns of patients in the last days of life.

Objectives: Assessment of SES and demographic profile of patients with advanced cancer receiving palliative care.

Materials and Methods: From May 2017 to October 2017 we assessed the demographic features and SES of 80 advanced cancer patients receiving palliative care by interviewing them face to face with the help of a self designed social assessment sheet.

Results: A total of 80 patients consented to be interviewed with regards to assess SES. Majorities were male patients (64%) with the highest percentage in the age group of 60-70years (33%). 38% of these patients were from rural surroundings. Only 38% of the patients had completed their basic education. Approximately 30% of the patients interviewed had income less than 1lakh/month while majority (>60%) had income within 1lakh - 2lakhs. In 30% of cases, the patient was the sole earner in the family.

Conclusion: It was observed that majority of patients and their family were constrained with regards to financial resources and large percentage of patients had social insecurity with respect to future of family members.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 38: THE IMPACT OF THE CARDIFF UNIVERSITY MSC PROGRAMME IN PALLIATIVE MEDICINE: (10 YEARS IN INDIA)

Nikki Pease 1, Jo Hayes 1, Fiona Rawlinson 1, Ilora Finlay 1

Introduction: Since its inception in 1987, undertaking the ‘Cardiff Diploma/MSc’ has helped develop many Palliative Medicine specialists, teachers, service leaders and researchers both within the UK and Internationally. With annual financial support, first awarded in 2006, from the Commonwealth Scholarship Commission, doctors from India have been supported to undertake the Cardiff University MSc in Palliative Medicine.

Objectives: This survey looks to quantify the impact of undertaking the Cardiff University Palliative Medicine Diploma or MSc on Indian doctors’ practice.

Methods: All Indian alumni were invited to complete a short, 10-question, anonymous on line survey. Response rate was 61% (n = 37). Respondents were asked to score (0-100) the impact the MSc had on their clinical, teaching, management/service lead, and research roles. As a measure of impact respondents were also invited to give details of any publications and special interests subsequently developed.

Results: On a scale of 0-100 (zero to high impact) average collated self-scored impact of undertaking the MSc in Palliative Medicine were; clinical role 82% (50-100); teaching role 82% (30-100); management/service lead role 68% (20-100) and research role 74% (35-100). Over 50 journal publications, 20 International poster presentations and several conference workshops were listed as a result of MSc work. 70% of respondents had developed a special interest as a result of undertaking the Diploma/MSc.

Conclusion: 10 years on it would seem that the Cardiff University MSc has had significant impact. Future plans include collaboration with the India alumni, to roll out further teaching and training material and to develop international research between the Cardiff team and India.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 39: ASSESSMENT OF ATTITUDE TOWARDS CARE OF DYING AMONG NURSING STUDENTS USING FROMMELT ATTITUDES TOWARD CARE OF THE DYING SCALE

Sherin Susan Paul N 1, Renu G 1, Thampi PT 1

Introduction: Nurses play an inevitable role in providing compassionate care and support to dying patients and their families. But it has been a bone of contention that whether the nursing curriculum is sufficiently set to achieve this goal.

Objectives: The primary objective of this study is to assess the attitude of nursing students attending a private nursing school in Central Travancore region towards the care of dying using the Frommelt Attitudes Toward Care of the Dying scale (FATCOD).

Methods: FATCOD was introduced among 146 participants that included all the BSc nursing students, excluding the first years, and all the MSc nursing students. FATCOD is a five point Likert scale with a total of 30 items and an arbitrary cut of 65% of the total score were chosen with those scoring more than that were assumed to have a positive attitude. In the data obtained univariate analysis, independent sample t test and principle component analysis (PCA) were done.

Results: The positive attitude towards dying was shown by 39% of the study participants. The mean FATCOD score of the participants were 95.81(SD +/- 8.029) with a average item level mean of 3.19 (SD +/- 0.27), which means that most of the students response were averaging towards the option uncertain. Those completed posting in palliative care ward had shown a statistically significant increase in mean score by 3.15 (p 0.02). PCA identified 3 questionable components for the FATCOD.

Conclusion: The revision of the current curriculum incorporating more of palliative care postings may help in developing positive attitude among students.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 40: “IMPORTANCE OF “HAPPINESS” IN PAEDIATRIC ONCOLOGY”

Manjari Bhatnagar 1, Meera Srivathsan 1

The idea of setting up this Foundation was to help children undergoing cancer treatment in an innovative non-medical way so that children can rediscover their childhood happiness despite of their illness and circumstance. This idea was the brainchild of Ms. Sandhya Sharad, the Founder of the Foundation, who realised the importance of wellness among children with cancer through happiness, yoga meditation, creative activities and empowering the children with knowledge. This stressed the fact that the way to a speedy recovery is by keeping children happy and distracted.

Why Happiness is Important: Happiness plays an important role in life, not only for cancer patients but patients in general. Happiness and Health definitely are linked. According to research, happy people cope better with stress and trauma, are more resilient, have stronger immune systems and live longer,” says Barbara Santay, therapist for Franciscan Alliance's Employee Assistance Program.

Michael Mirochna, M.D., a family medicine physician with Lake Porter Primary Care and Porter Physician Group of Porter Regional Hospital mentions that, “When a patient's mood is good, they’ll be in less pain. If they start to feel worse and you dig into their psychosocial history, you find that something happened (their dog died, relationship problems, etc.). There's a close correlation with mood and pain in that regard.”

Friendly social contact and staying happy has been proven to decrease stress hormones. As observed at Kidwai Memorial Institute of Oncology, paediatric ward, fortunately, with younger children, below 10 years of age, treat pain and after effects of radiation and chemo as any other illness and the intensity of cancer does not register per adult perception. Hence, keeping them active and distracted in a fun way helps them manage the long hospital stay of nearly 8 to 10 months in an enjoyable manner. This is how the work at Samiksha Foundation is structured.

Even children who are aware of their cancer illness are engaged in such a happy way that they look forward to the fun events and are deeply involved in their schooling activities which are held from 10.30 a.m. to 3.30 a.m. along with regular time table covering teaching/yoga, meditation, and creative activities.

What Exactly is “Happiness” in Children?: Through our interactions with children over past 8 years we have experienced that it is easier to make children happy than adults, mainly because the child's wants are few and they are satisfied easily. We have noticed that children can stay happier for a longer stretch of time. The personal attention they receive from the teachers and volunteers is enough to cater to their small needs for abundant happiness. Increasing the “Happiness Quotient” of school going children has been our focus. This increases when the children:

  1. Interact with teachers and volunteers or

  2. Study in a stress free environment without peer pressure and tests or

  3. Receive gifts at their time of birthday or receive surprise gifts without any reason or get their favourite fruits/food or

  4. Get study material books, stationery, and school material or

  5. Perform Yoga/meditation or

  6. Join in for creative activities like Origami, Clay Handling, Pottery, Storytelling or

  7. Partake in laughter and entertainment sessions.

Experts say that a continual state of happiness has nothing to do with circumstances or materialistic prized possessions, which actually are short lived and momentary but happiness comes from their own inner outlook and emotional health. In the children's case, they immerse themselves in the activities conducted by the Foundation. This helps in changing their inner outlook.

Physical Activities Boost Happiness: There are some researches testifying that exercise improves the mood of adults. “We strongly encourage physical activity with our patients diagnosed with depression,” says Mirochna. “If their depression is so bad that they don’t feel like doing anything at all, we encourage them to at least do some physical activity, and it immediately makes them feel better.” These activities work better than antidepressant medicines in adults.

Now, in case of children the activities stimulate them and bring out the best of moods not only in children but also the caregivers who stay with the children at the hospital for a long period of time.

The caregivers get “booster doses” of happiness just seeing their children happy and laughing with the programs which are so meticulously created and conducted by the foundation.

Dawn Wood, certified therapeutic recreation specialist and instructor of the Benefits of Exercise class at Methodist Hospitals, says, “One of the emotional benefits of exercise is that you are doing good for your body and yourself. When you feel good about yourself, it gives you confidence to meet daily challenges, meet goals, and communicate with others.”

We believe that the statement above holds good and forms the bedrock of “Samiksha Foundation – Caring for Children with Cancer Trust” to empower the children with knowledge , increase their “Happiness Quotient” so that the children can go back to main stream life with hope and confidence and relive their happy school days and cherish their childhood.

Testimonials of our mission to increase the “Happiness Quotient of the children will be presented.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 41: ESTABLISHING A PALLIATIVE CARE SETTING IN A FAITH BASED ORGANISATION IN KERALA: THE CHALLENGES FACED

Thampi PT 1, Sherin Susan N Paul 1

Introduction: The state of Kerala has a well-developed health care delivery system that constitute not just the public healthcare delivery, but also equally enriched and contributed by the private sector which includes both faith based organisations and corporates. There are nearly 200 catholic institutions alone working in the field of health care in the state.

Objective: The primary objective of this case study was to highlight the work done by one such faith based organisations in the field of palliative care and challenges faced by them.

Methods: The previous records and charts were analysed to sum up the quantum of work done since its inception and in depth interviews were carried out with three of the key founding members to identify the challenges faced. Descriptive statistics were done for quantitative data. The qualitative data was coded using N vivo and thematic analysis was done to identify the key challenges.

Results: A total 3750 new cases registered with the system and outpatient care was given to nearly 30,000 patients since its inception in 2002. The total inpatient days since 2008, were nearly 40000 days and provides home care to a population residing within 30 kilometer radius. Raising adequate monetary support for the day to day activities of the unit and generating community awareness regarding the need of palliative care were the key challenges identified.

Conclusion: For successful penetration of palliative care services into the society private sector should also be actively involved in program planning and implementation.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 42: PALLIATIVE CARE PROGRAM DEVELOPMENT IN A LOW-MIDDLE INCOME COUNTRY: DELIVERY OF CARE BY A NON-GOVERNMENTAL ORGANIZATION IN INDIA

Rajagopal MR 1, Safiya Karim 1, Anjali Krishnan 1, Christopher M Booth 1

Introduction: Poor access to effective palliative care is now recognized as a global issue with an urgent need for scale - up of services, particularly in low and middle income countries (LMICs). There is lack of published data to inform design of palliative care delivery systems in the setting of limited resources of most LMICs.

Objectives: To describe the population trends in case volumes, elements of clinical care and to estimate economic costs of providing care and thereby to develop a model to scale up palliative care services in other LMICs.

Methods: The study employed administrative records to describe case volumes, setting of care and organizational expenditures. Costs are reported in $US and are also corrected for Organization for Economic Co-operation and Development purchasing power parity (PPP).

Results: More than ten thousand new patients were seen at TIPS during 2007-2016 predominantly cancer. The proportion of patients with cancer increased over time (from 56% to 66%, p < 0.001). During 2014-2016, there has been substantial growth in outpatient visits (26%), inpatient days (49%), in patient visits at other hospitals (41%) and home visits (57%). The mean cost per clinical encounter in 2016 was $15 (PPP corrected $263). This model of care represents an affordable and high value care that forms an economic basis upon which state and union ministers can plan the expansion of such services.

Conclusions: Demand for palliative care services has increased significantly and clinical services by TIPS may serve as a model for development of other palliative care programs in LMICs.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 43: STUDY TO ASSESS THE KNOWLEDGE ON PALLIATIVE CARE AMONG THE NURSES

Jothimani Chinnaswamy 1, Lakshmi Prabha Srinivasan 1, Anand Narayan Chinnachamy 1

Introduction: Cancer has been the leading cause of death worldwide for more than two decades. The goal of cancer palliative care services are to prevent and relieve suffering and to support the best possible quality of life for the patient and their families regardless of the stage of disease. Nurses are the most valuable palliative care team members who address the physical, functional, social and spiritual dimensions of care.

Objective: The study attempted to assess the knowledge among nurses about the palliative care in oncology wards of G. Kuppusamy Naidu Memorial Hospital, Coimbatore, Tamil Nadu.

Materials and Methods: Quantitative design method was used. The study utilised a self report questionnairre - PCKT developed by Nakazaw et al which had 20 items for each of which the person had to indicate “correct”, “incorrect” or “unsure”. A score of 1 is given to a person with the answer of ‘correct’ and a score of 0 is given otherwise and the total and subscales scores were calculated. The PCKT had five subscales: Philosophy-2 items,pain-6 items,dyspnea-4 items,psychiatreic problems 4 items, Gastro intestinal problems- 4 items. Overall and subscale scores were summarized with n, Mean, SD, Median, 25th and 75th Percentile. One-way ANOVA was used to test the significant difference in the overall score among the demographic characteristics. p-value of less than 0.05 was considered to be statistical significance.

Results: The overall mean (SD) of PCKT was 13.1 (2.22) which indicates that the nurses had more than moderate level of knowledge in palliative care. The mean (median) score for the subscales of Psychiatric and Gastro-Intestinal were 2.86 (3) and 2.94 (3) respectively. This indicates that on an average,nurses had a more than moderate awareness on both the subscales. The period of experience in working with terminally ill patients does have significant impact on total score of knowledge.

Conclusion: Overall the nurses had more than moderate level of knowledge about palliative care. The nurses had moderate knowledge about Psychiatric and Gastro Intestinal problems than other aspects indicated in PCKT. The nurses had poor knowledge on pain subscale.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 44: A MODEL TO INTEGRATE MENTAL HEALTH IN PALLIATIVE CARE FOR IMPROVING QUALITY OF LIFE

Sherin Wilfred 1, Amirtha Thampi 1, Gayathri Babu Sr 1, Chitra Venkateswaran 1

Background: Mental health issues have an enormous impact on quality of life. But they are often unacknowledged, under diagnosed, and undertreated. There is an urgent need for integrated pathways to address mental health issues in palliative care and models in India which suits the local needs.

Objective: Establish an integrated model addressing mental health issues in a community based palliative care setting in Kerala.

Methods: Developing and empowering a core group (multidisciplinary) within the palliative care team. Input from a psychiatrist to plan the program, enable training, provide clinical services and liaise with the team. Model delivery planned through in-patient, out-patient and home care programs. Regular follow up is done by the core team and regular discussion within the team using new technology like Zoom, Skype and Whatsapp.

Outcomes:

  • Empowerment of core team to be able to identify persons in need. In the process the primary team receives hands on training

  • Significant improvement observed in patients/family

  • Identifying and developing strategies to overcome challenges

  • Networking with government sectors and community, as a result improving awareness addressing social stigma.

Conclusion: An integrated model for addressing mental health issue is feasible and will definitely improve the quality of life.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 46: EFFECTIVE NURSING ASSESSMENT AND COMMUNICATION IN PALLIATIVE CARE

Laxmi Prakash Patil 1

Objective:

  1. To understand the difficulties in communicating with patient

  2. Understand the impact of illness on patient, families, and carers

  3. To observe, understand and analyze the barriers of communication within families and encourage open communication

  4. Appreciate the role of family functioning and its effect on death, dying and bereavement

  5. Learn the common elements of systemic approach in communicating with patients and families.

Methodology: Randomly selected 20 patients and caregivers from O.P.D Dept. of Palliative Medicine, undergoing symptomatic treatment, structured interviews of patients were conducted and data was analysed.

Results:

  1. The prime difficulties faced are language of patient and families, as majority comes from different state

  2. Most of the caregivers don’t want to explain bad prognosis to the patients, which makes decision making difficult

  3. Proper communication encourages positive thinking towards disease symptom management

  4. It also improves Quality of life (QoL) of patients and family.

Conclusion: There is great need to pay attention to good communication while dealing with patients/caregivers in palliative care. This enhances effective and constructive coping mechanisms. This also improves QoL of patients and caregivers.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 47: RISK OF THROMBOEMBOLISM AND PROPHYLAXIS IN ONCOLOGY: AN AUDIT AT A TERTIARY REFERRAL HOSPITAL

Arun Vivek 1, Sunitha Daniel 1, Charu Singh 1, Chitra Venkateswaran 1

Introduction: Incidence of venous thrombo-embolism (VTE) and pulmonary embolism in Oncology patients have been extensively studied in developed countries which shows that such patients are at high risk either due to the chemotherapy, their disease condition or due to their chronic bed bound state following which certain risk factors have also been identified. Prophylactic measures for the prevention is important, considering this entity to be a common avoidable cause of death among malignancy patients. Indian literature related to this aspect is limited. This uncertainty of VTE deaths in Indians have resulted in patients not receiving adequate prophylactic measures for prevention of VTE. Pulmonary embolism is also under reported.

Objective: To assess the risk of venous thromboembolism among oncology patients and to see if any prophylaxis have been prescribed.

Methods: Data collected from Oncology patients for a prospective audit in a tertiary referral centre with a comprehensive cancer based on NICE guidelines.

Results: The study was done on 60 patients with malignancy median age of 57 years of which 57% were male patients and 43% were female patients. More than 50% of the patients were found to have a Thrombotic risk of 3 and above but majority of those patients did not have a bleeding risk. Only 2 patients had VTE prophylactic measures implemented.

Conclusion: Majority of oncology patients have a high thrombotic risk but did not receive VTE prophylaxis. This indicates the need of routine assessment of VTE risk and prevention of embolism which could potentially be fatal.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 48: EFFECT OF SHORT-TERM PALLIATIVE CARE EDUCATIONAL PROGRAM ON KNOWLEDGE, ATTITUDES AND BELIEFS IN PHYSIOTHERAPY STUDENTS

Iram Husain 1, Zubia Veqar 1

Introduction: Palliative care is a multidisciplinary approach, which also includes physiotherapist. Physiotherapist plays an important role in multidisciplinary palliative care team as physiotherapy is helpful in decreasing symptoms, hence improving quality of life of patients with life threatening disease and conditions. Education and training in palliative care influences the level of care provided and the level of team participation of the physiotherapy professionals. There is need to incorporate palliative care training program at undergraduate level and introduce training in palliative care that helps to make graduates more competent and good member of palliative care.

Objective: To see the impact of palliative care educational program on the final year physiotherapy students of various universities by using Knowledge questionnaire for knowledge, FATCOD-B scale for attitude and belief questions for belief as outcome measures.

Methods: Following the approval from the university institutional ethical committee, permission was taken for conducting study from various universities and subject recruitment was initiated. Final year physiotherapy students were recruited from Jamia Millia Islamia, Jamia Hamdard, Amity University on the basis of inclusion criteria and exclusion criteria and were informed about the study's purpose and methodology. They were given an informed consent form explaining their rights as research subjects. All identifying informations were kept confidential by assigning a number to each subject. FATCOD-B scale and knowledge and belief questionnaire were filled by the students just before the educational program on palliative care on first session on day 1 and recorded as pre reading and after the last session of educational program on day 3 as post reading.

Results: The results demonstrates that the level of knowledge has increased after the educational program, they are further supported by the development of more positive attitudes and amplification in the belief system of the participants towards palliative care after taking educational sessions.

Conclusion: The focused educational program on palliative care had positively influenced the physiotherapy students in this study by bringing about statistically significant changes in their knowledge, attitudes and beliefs. Keeping in mind the growth in the field and the necessity in the society, this course must be added to the physiotherapy undergraduate curriculum.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 49: PERCEPTIONS ABOUT MEANING IN LIFE AND DEATH AMONG HEALTH PROFESSIONALS IN A MEDICAL COLLEGE IN PUDUCHERRY

Prasad Dhikale 1, Srikanth S 1, Praveen Kumar RS 1, Latha S 1

Introduction: Attitude towards death influence the behavior of doctors with respect to communication and care of terminally ill patients. The objective was to study the meaning in life and attitude towards death among doctors.

Methods: A cross sectional study was carried out among 30 married doctors in a medical college in Puducherry. A questionnaire with Death Attitude Scale statements was administered. The responses were scored between strongly agree (7) and strongly disagree (1).

Results: The mean age of the participants was 47.4 + 14.5 years. About 70% were males. Median years after Post Graduation were 10.5 years. About 40% said that being part of family and fulfilling their responsibilities give meaning to their life. About 90% of them felt their end of life to be at home in presence of their loved ones. About 40% were not comfortable in talking end of life issues with the patient. There was no significant difference (P > 0.05) between gender on the dimensions of death attitude. Majority of the doctors had a neutral attitude towards death. The results have been detailed in Table 1.

Table 1.

Attitude towards death

graphic file with name IJPC-24-228-g007.jpg

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Conclusion: Communication skills development training for dealing with end of life issues will improve the confidence of the health care professionals in managing palliative care patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 50: HOW STRESSED ARE PALLIATIVE CARE PROFESSIONALS?

Savita Luka Masih Sr 1

Introduction: Palliative Care Teams handle death and dying routinely. Palliative Care Professionals handle patients whose symptoms may be refractory. Nurses take care of nursing issues like Wound Care, Bed Sores Lymphedema etc. Beyond medical and physical care, counselors have to involve deeply inside the emotions of patients and their care givers, which often causes stress for them. At times they feel responsible for not providing solutions to their problems and get frustrated and stressed out.

Objective: This study aims at finding the stress levels of palliative Care Professionals at CanSupport. CanSupport is providing free Home Based Palliative Care to Cancer patients in Delhi and NCR for more than 20 years.

Methods: Maslach Burnout inventory questionnaire was used to find the stress levels of Palliative Care Professionals.

Results: Though caring for the dying is stressful. Prompt and adequate Pain Management provided great satisfaction to the professionals. The professionals understood the emotions of their patients and dealt with their problems effectively. They had feeling of accomplishment as they were able to positively influence the lives of patients and their care givers. Helping patients to live well and leave well gives the palliative care team great satisfaction.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 51: VALIDATION OF THE HINDI VERSION OF THE EORTC QLQ-C15-PAL QUESTIONNAIRE FOR THE EVALUATION OF QUALITY OF LIFE OF ADVANCED CANCER PATIENTS AT TERTIARY CARE CENTRE, INDIA

Sidharth Puri 1, Seema Mishra 1, Sushma Bhatnagar 1

Introduction: Quality of life (QOL) is a central concept in palliative medicine and in healthcare in general.

The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative Care (EORTC-QLQ-C15 PAL) is recommended by EORTC for patients with advanced cancer as a short, validated and reliable tool for QOL assessment.

The EORTC-QLQ-C15-PAL scale has been translated into many languages. However, this scale is not validated in Hindi. The purpose of our study is to present the Hindi version of EORTC-QLQ-C15 PAL and validate its psychometric properties among palliative care patients in India.

Objectives: Validation of the Hindi version of the EORTC QLQ-C15-PAL questionnaire for the evaluation of quality of life of advanced cancer patients at tertiary care centre, India.

Materials and Methods: Design: A cross sectional observation study.

The study was conducted in Department of Oncoanesthesia and Palliative Medicine, Dr BRAIRCH All India Institute of Medical Sciences, New Delhi in 75 patients presenting to OPD or admitted in ward.

All patients completed EORTC QLQ-C15-PAL Hindi version, Brief pain inventory (short form) and performance status was assessed using Karnofsky Performance Status (KPS) scale.

Results: Total of 75 patients completed the study (mean age, 45.05 + 10.03 years). The value of Cronchbach's alpha was >0.7 except for fatigue (0.60) confirming reliability of scale.

Convergent validity can be seen by correlation between EORTC QLQ-C15-PAL with the BPI (SF). Most questionnaires has moderate to weak correlations with the others.

EORTC QLQ-C15-PAL detected significant degree in performance status supporting known group validity. KPS score decreased, patient physical and emotional function were diminished and global QOL declined and symptoms become more frank. Average time taken to complete questionnaire was 9.6 min.

Conclusion: The Hindi version of EORTC QLQ-C15-PAL showed satisfactory psychometric properties when administered to advanced cancer patients in India and is a valid and reliable scale.

Most patients completed the questionnaire within a reasonable time and is therefore feasible for use in clinical practice and research.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 52: EVALUATION OF SENSITIZATION PROGRAMS IN PALLIATIVE CARE FOR NURSES

Tamizharasi E 1, Vanitha P 1, Latha S 1, Srikanth S 1

Introduction: Nurses play an intrinsic role in a palliative care team. Sustained knowledge level among them is of paramount importance in influencing the care received by patients. The objective of this study was to assess the existing level of knowledge in palliative care and the impact of sensitization programs among nurses in a medical college hospital in Puducherry.

Methods: Two day sensitization programs on palliative care were conducted for 134 nurses. The teaching content comprised of definition, diseases needing palliative care, total pain concept, basic communication skills and nursing issues in a palliative care unit. Role plays, discussion of case histories of patients and videos were used in the programs. The programs were evaluated using a Pre/Post test self reported questionnaire. The pretest was done on the day of the program and post-test was administered one month after the program.

Results: The mean age of participants was 26.6 + 3.5 years. Although most of them had heard about palliative care, inadequate knowledge on the basic concepts was observed. A significant difference (P < 0.05) in the mean score between the pre-test (7.2) out of a total score of 15 and the post-test (12.9) was found.

Conclusion: The sensitization programs produced a significant increase in the knowledge level of the staff. The documentation of care in nurse's record became precise and specific to the needs of patients. The study emphasizes the need for creating awareness among nurses to provide a comprehensive care to palliative care patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 53: NATIONAL FELLOWSHIP IN PALLIATIVE MEDICINE: THIRTEEN YEARS' EXPERIENCE

Nisha Krishnadasan 1, Lulu Mathews 1, Stanley C Macaden 1, Anil Paleri 1, Rajashree KC 1, Ronald Lalthanmawia 1, Priya John 1, Lalrambuatsaiha B 1

Introduction: Building the capacity of doctors in the principles and practice of Palliative care is an urgent need. The National Fellowship in Palliative Medicine (NFPM) was initiated jointly in August 2004 by Christian Medical Association of India (CMAI) New Delhi, and Institute of Palliative Medicine (IPM) Calicut – (WHO Collaborating Centre).

Objectives: Build the capacity of doctors to provide appropriate, relevant, and cost-effective palliative care services.

Methods: The one-year National Fellowship Programme is structured as a distance education model. The course structure is:

  1. Ten days orientation and theory classes at IPM Calicut

  2. Ten modules with assignments to be completed

  3. Clinical contact sessions - 20 days hands-on clinical training at any two of the 12 centres in India

  4. Clinical Audit project submission

  5. Ongoing evaluation and final 2-day evaluation at Calicut

  6. Final Evaluation consisting of Theory, OSCE, Case presentation, Audit presentation and Viva Voce.

Results: In thirteen years, 160 senior doctors from India and abroad, have completed the course. Majority of the graduates have either started new palliative care services or improved existing services in their institutions and feel that providing an effective and relevant palliative care service generated goodwill among the community they serve.

Conclusions: The National Fellowship in Palliative Medicine training programme has been relevant in building capacity of individuals in providing Palliative Care services. In future, it is planned to accredit this programme under the Indian College of Palliative Medicine, which is in its inception.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 54: EMOTIONAL SUPPORT: TELEPHONE HELPLINE

Ratna Jajoria 1, Kamlesh Choudhary 1

Introduction: Diagnosis of Cancer changes life. The patient and the family members are in shock, denial, depression, anxiety, anger, shame, guilt and fear. They need emotional support. “CanSupport Telephone Helpline” executives step in and offer this support. CanSupport Telephone Helpline” provides them this platform.

Objective: This study aims at analyzing emotional calls received during last four years and getting lessons for the future.

Methods: Analysis of calls data compiled during the last four years.

Result: The following results were obtained.

Total Number of calls during the last 4 years were--18626.

  1. Total Emotional Calls--2036

  2. Percentage of emotional calls—10.9 %

  3. Percentage of calls where Anxiety is predominant--68.6%

  4. Percentage of calls where Grief is predominant---59.9 %

  5. Percentage of calls where Fear is predominant---46.6 %

  6. Percentage of male callers 69%

Conclusions: Telephone Helpline offers a platform to offer Emotional support. The caller anonymity is an advantage. More men avail this facility because they are reluctant to opt for face to face counseling.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 55: NEED OF PALLIATIVE CARE IN RHEUMATOID ARTHRITIS: A PROSPECTIVE OBSERVATIONAL STUDY

Kiran Mahendru 1, Nishkarsh Gupta 1, Manish Soneja 1, Rakesh Garg 1, Vinod Kumar 1, Sachidanand Jee Bharti 1, Seema Mishra 1, Sushma Bhatnagar 1

Context: Rheumatoid arthritis (RA) is a chronic inflammatory disorder that affects joints and can damage a wide variety of body systems, including the skin, eyes, lungs, heart and blood vessels. The major research in rheumatology is directed towards achieving remission, even in highly active stages of the disease. Despite optimal treatment there may be phases of activity and remissions and patients tend to have a gradual downhill course. So, assessment of functional status and quality of life (QOL) is important in these patients.

Aims: To assess the degree of disability, disease severity, psychological distress, pain and QOL in patients with RA and correlate them with the severity of disease.

Settings and Design: An observational study was performed in 50 adult patients aged more than 18 years diagnosed with RA attending the outpatient department from January 2018 at Dr. B.R.A IRCH, AIIMS, New Delhi.

Materials and Methods: After informed consent, the severity of disease was assessed using DAS28 score. The severity of disease was then correlated with degree of disability (HAQ-DI score), psychological distress (DASS score) and QOL (SF-36 survey).

Results: There was a strong positive correlation between DAS28 score (severity of disease) with HAQ-DI score (degree of disability) (P = 0.0000), NRS (P = 0.0002), depression (P = 0.0000), stress (P = 0.0000) and anxiety (P = 0.0000). A strong negative correlation was seen between severity of disease and general health of the patient. (P = 0.0015).

Conclusion: Palliative care is an approach that improves the quality of life of patients and their families. Patients with severe RA tend to have disability, increased pain and reduced physical function. So, there is unmet need for palliative care in RA to enhance patient's QOL.

Keywords: Observational study; palliative care; quality of life; rheumatoid arthritis

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 56: STUDY OF THE QUALITY IMPROVEMENT INITIATIVE FOR HOME CARE SERVICES OF TRIVANDRUM INSTITUTE OF PALLIATIVE CARE

Sudhamani S 1, Sunilkumar MM 1, Nandini Vallath 1, Amritha Thampi Geetha 1

Introduction: TIPS envisions access to quality palliative care (PC) for all those who need it. 200 patients receive regular HC from the city team (CT) that operates through one HC vehicle within the city. The team has persistently expressed dissatisfaction and stated their problem to be the inadequate time available for providing PC inputs for the patients as per the intensity and frequency of their needs.

Objectives: Align the resources with the PC needs of HC patient and improve the satisfaction levels of the HC team and family.

Methods: Consultative application of triaging &strategic planning of HC using quality improvement tools in collaboration with Stanford Medicine: PC-PAICE India Collaborative Steps: (1) Record baseline satisfaction levels of the family and the team members. (2) List the contributing factors to the mismatch. (3) Finalize the field support team, tools. (3) Triage patients for HC as per the tools. (4) Evaluate intensity of PC needs to low, mid and high intensity of care needs. (5) Apply the strategies for HC visits. (6) Re-evaluate satisfaction levels by end of January 2018.

Results: Would be arrived at by comparing the findings of baseline survey and the interim survey.

Conclusion: would be presented based on the percentage change in the levels of satisfaction, long term applicability, need for revisions, and refinements of the methods.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 57: MAPPING PALLIATIVE CARE AWARENESS IN INDIA THROUGH INTERNET SEARCH TRENDS

Shikhar More 1, Seema Mishra 1, Sushma Bhatnagar 1, Rakesh Garg 1, Nishkarsh Gupta 1, Sachidanand Jee Bharti 1, Vinod Kumar 1

Palliative care services in India have come a long way since its humble beginnings over three decades ago. Although there is increasing awareness within the healthcare community and government, awareness about symptom palliation, end-of-life care and the concept of good death is still lacking among the general lay population. Lack of awareness is considered one of the major barriers to efficient delivery of palliative services in major parts of the country. India has over 460 million internet users which is more than 34% of its entire population. Internet search trends is a modern and powerful tool which can gauge the relative popularity of a certain topic in the society as a whole. It has been used in the past to gauge society's curiosity and behaviour in various parallels like elections, stock markets, economy; social issues of race and gender equality. Search data has also been used to track influenza like illness in a population.

Our aim was to asses the awareness and interest of the general Indian population towards palliative care through analysis of search trends of various terms and topics related to palliative and cancer supportive care.

Methods: ‘Google trends’ is a service by the internet giant Google Inc. that assigns a search index number to represent the popularity of a certain search term in a particular region at a particular time point.

The index number is calculated on the basis of proportionate volumes of a particular search term with respect to total number of search queries.

We searched google trends data about various search keywords related to palliative over the past 12 months and compared it to various regions across the globe and within India.

Search terms which generated enough popularity so as to have search index >1 throughout the past one year were included.

Results: The most commonly searched keyword worldwide was ‘hospice’ followed by ‘cancer pain’, ‘palliative care’, ‘end-of-life care’ and ‘good death’. In India however the most commonly searched term was ‘cancer pain’. The internet search indices in India lacked behind the worldwide average in all of the five search terms. For the term ‘palliative care’, Australia had the highest index (100) whereas India ranked 44th with the index at 11. Within India, Kerala was the state with the highest index, followed by Puducherry (98), Karnataka (29), Tamil Nadu (28). Similarly, for ‘hospice care’, New Zealand has the highest search index and India ranked 36th with search index of 5. Within India, Kerala had the highest search index for four out of five terms and consistently followed by the southern states of Tamil Nadu and Karnataka.

Discussion: Internet search trends were in corroboration with the levels of palliative care developments as described by Lynch et al globally. Within India too the search index was consistently highest in Kerala where palliative care is deeply penetrated followed by other southern states where such facilities are more in number and density compared to Northern states like Bihar, Uttar Pradesh, Jharkhand etc.

Conclusion: Internet search trends for palliative care related terms have shown close correlation with the levels of development of such services and centers. Thus these trends serve as a valuable tool to asses over time the curiosity of a community towards palliative care. It can help us delineate areas which require more attention and also monitor the effects of development and awareness programs.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 58: JOURNEY OF CANCER PATIENTS ATTENDING A TERTIARY CANCER CENTER IN INDIA: A PROSPECTIVE OBSERVATIONAL STUDY

Ajisha PA 1, Sushma Bhatnagar 1, Seema Mishra 1, Vinod Kumar 1, Sachidanand Jee Bharti 1, Nishkarsh Gupta 1, Rakesh Garg 1

Introduction: Journey of cancer patients from the beginning of their symptoms and suspicion of cancer to diagnosis, planning and beginning of treatment is often long and cumbersome and definitely early diagnosis and treatment always have a positive outcome.[1] Low awareness of the presenting signs and symptoms of cancer and limited knowledge of the availability of treatment facilities contributes to delay of treatment.[2] At times missing the diagnosis of cancer, delay in the diagnosis, delay in the investigations and work up super add fear and anxiety to the patients and they lose hope, strength and courage to go through the treatment and they give up trust in health system.. Better understanding of the reasons behind the delay in diagnosis and starting of the treatment will definitely help in strengthening of the available facilities, referral system and infrastructure.

Objective: To trace the Journey of Cancer patients from symptom onset to the beginning of treatment in a Cancer Hospital in India.

Methodology: Prospective observational study of an unbiased random sample of patients attending tertiary cancer center was done.

A performa was used to collect data regarding sociodemographic profile.

They were interviewed for 30 minutes and data regarding their initial symptoms, pathway they gone through from symptom onset to the beginning of treatment, chronological order of facilities they have visited before reaching IRCH, timing of symptom onset, diagnosis and treatment were recorded.

Results: Total number of patient included till now is 92.

  • Male were 33 and female 59.32 from Delhi and 60 from other states

  • Maximum delay is seen between symptom onset and consultation with physician 232 days (4 days- 312 days). Average time consumed in State based hospital is 74 days

  • Average time consumed in Delhi based hospital is 44 days.

Conclusion: The lack of awareness among patients and misdiagnosis by the general physicians and primarily treated private hospitals often prolongs the journey of cancer patients and delays the treatment. Government authorities and policy makers must take initiative to create awareness and education among people and physicians regarding the early detection of cancer, especially in rural India. Its time to initiate Faster Cancer Treatment Programmes with a standard time frame to diagnose cancer in suspected patients and and to begin treatment in diagnosed cases and it will definitely produce rewarding outcomes.

REFERENCES

  1. Bhatnagar S, Goyal A, Sharma A, Joshi S, Ahmed SM. Journey of patients with cancer: A systematic evaluation at tertiary care center in India. Am J Hosp Palliat Care 2014;31:406-13.

  2. Pati S, Hussain MA, Chauhan AS, Mallick D, Nayak S. Patient navigation pathway and barriers to treatment seeking in cancer in India: A qualitative inquiry. Cancer Epidemiol 2013;37:973-8.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 59: FACTORS RESPONSIBLE FOR DELAYED PRESENTATION OF CANCER PATIENTS TO A TERTIARY CANCER CENTRE IN INDIA: AN OBSERVATIONAL STUDY

Wasimul Hoda 1, Sushma Bhatnagar 1

Introduction: Cancer epidemic has engulfed India & the whole world. Its estimated to be ouble in the next five years, from slightly over a million cases in 2012 to about 1.7 million cancer cases in 2035. Therefore number of cancer patients are increasing tremendously inspite of all the efforts made by the Government. Main reason is delayed presentation of patients to a tertiary centre, leading to delayed diagnosis & hence delayed initiation of cancer treatment. To understand the factors for such delays at each step in the Indian scenario, we conducted a study on cancer patients, evaluating their journey and barriers to early diagnosis & treatment.

Aim: Identification of barriers at individual, community and system levels, preventing early diagnosis and treatment of cancer patients.

Methods: A Prospective Observational study in 70 newly registered cancer patients seeking treatment in various department of DR B R Ambedkar Institute of Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi was done. Data regarding the socio-demographic profile, pathway, time between various consultations, difficulties, barriers and hardships they have gone through from symptom onset to the beginning of treatment was recorded in a structured proforma.

Results: 95% of patients had heard about cancer but only 93% of patients had knowledge about the carcinogenesis. None of the patients had undergone cancer screening prior to development of first symptom. 55% of patients presented in early stage, 25% in advanced and 20% in metastatic stage. Lump in breast cancer, ulcer in oral cancer, pain in gastrointestinal & urogenital, swelling in musculoskeletal & fever in blood cancer were the first symptoms reported. The delays at each level were documented as mean & median in number of days. Delay from the development of first sign & symptom to first consultation with primary physician was of mean 260 days & median 90 days. Delay because of consultation to other traditional medicines in between was of mean 140 days & median 30 days. Time consumed after first consultation to second specialized physician was of mean 20days & mean 10 days. From the second consultation to the oncologist consultation the time consumed was of mean 50 days & median 2 days. After the diagnosis of cancer to the initiation of treatment the time consumed was of mean 48 days & median 10 days. In 70% of cases, the reason of delay was Lack of awareness & ignorance of initial signs & symptoms as mild ailments . Poor knowledge of initial physicians & misdiagnosis at primary level in 50%, financial constraints and cost of treatment in 48%, belief in alternative medicines in 38% ,Social inhibition & shyness in 12.5% ,Fear of treatment & denial in 10% and Poor family support in 8%.

Conclusion: More than fifty percentage of patients can present in early stage of cancer with better treatment possibilities if the above mentioned barriers are rectified. As most of the patients were unaware of initial signs & symptoms there is a need to raise public awareness regarding early symptoms of cancer. Upgrading the knowledge of primary physicians, treatment facilities at primary health levels, enhancing the patient admission capacity with early diagnosis at tertiary centre and providing financial support to poor patients is needed and recommended.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 60: A PROSPECTIVE STUDY OF ENQUIRY PATTERNS AT CIPLA PALLIATIVE CARE AND TRAINING CENTRE

Priya Singh 1, Vinay Naik 1

Introduction: Cancer patients experience a range of symptoms in their disease trajectory. Enquiry taking is a standard procedure where information related to patient background and current symptom burden is collected.

Objective: To study the patterns of enquiries received at the OPD of Cipla Palliative Care and Training Centre.

Materials and Methods: Information from enquiries coming to the OPD at Cipla Palliative Care and Training Centre were collected in an in-house form. These were analyzed to understand any emerging patterns.

Results: Enquiries received were referred to the Centre from different sources such as Friends/Relatives, Doctors etc. Enquirers comprised of Relatives, Spouse, Children or in some cases neighbors and friends. The enquirers belonged to different age groups. Patterns were seen in the type of cancers.

Conclusion: Information obtained through enquiries can help a Palliative Care team to provide an individualized palliative care experience to the patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 61: A CROSS-SECTIONAL STUDY ON BURDEN AMONG CAREGIVERS OF PATIENTS WITH CANCER IN A TERTIARY CANCER CENTRE

Puneet Rathore 1, Nandan Choudhary 1, Seema Mishra 1

Introduction: Involvement of family caregivers is essential for optimal treatment of cancer patients in ensuring treatment compliance, continuity of care, and social support, particularly at the end of life. The diagnosis of cancer presents a major crisis not only to the patient but also to the patient's primary caregiver. Caregivers often assume this role under sudden and extreme circumstances, with minimal preparation and uneven guidance and support from the healthcare system. Caring for a family member with cancer poses significant challenges, with considerable psychological and physical consequences for the caregiver. Family caregiving has gained attention in the past decade with growing realization that support for family caregivers benefits the caregiver, the patient, and the healthcare team.

Objectives: Our primary objective is to understand the burden among caregivers of patients with cancer using care giver burden scale (21 item questionnaire).

Methodology: A cross-sectional study was done in palliative care unit at Dr BRAIRCH, AIIMS with sample size of 100. All cancer patients receiving palliative care at PCU were included in this study. Care giver burden scale of 21 items was used for assessing burden in care giver. The data was analysed using SPSS software and MS excel software.

Results: In this study, maximum patients were in 41-60 years age group (45.5%), male were 37% and female were 63%. Maximum patient had ongoing anticancer therapy (37%), 30% had completed their therapy. Male caregivers were (51%) and female caregivers were (49%). In maximum patient, son (24%) was the main care giver followed by husband (20%). Maximum caregivers were farmers by occupation (17%). Maximum patient had mild to moderate burden score (53%) followed by moderate to severe by (22%), little or no burden (15%) and only (9%) had severe burden.

Conclusions: This study shows that India being a culturally rich country has mainly mild to moderate burden in care givers of cancer patient. Further study with larger sample size should be done to estimate burden in caregivers of cancer patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 62: IN VITRO CYTOPROTECTIVE ACTIVITY OF VERNONIA CINEREA ON HUMAN EMBRYONIC KIDNEY AND HUMAN CERVIX EPITHELOID CARCINOMA CELL LINES AGAINST 5-FLUOROURACIL INDUCED TOXICITY

Shiny Jasphin 1, Archana PR 1, Arul Amuthan 1

Background: 5-Fluorouracil (FU) is an anticancer drug that causes side effects. Traditional Siddha Medicine literature suggests the use of Vernonia Cinerea (VC) to protect organs from drug toxicities.

Aim: This study was aimed to evaluate the cytoprotective effect of VC in normal and cancer cells.

Methods: Aqueous extract of VC was prepared by cold maceration. In 96 well plate, various doses of FU, VC and their combinations were added to Human embryonic kidney (HEK293) normal cells and Human cervix epitheloid carcinoma (HELA) cells and incubated at 37°C for 48 hours. The cells were stained with sulforhodamine B. The absorbance reading was taken at 564 nm using microplate reader. The 50% inhibitory concentration (IC50) was calculated.

Results: The IC50 values of FU in HEK293 and HELA were 14.5 µg/ml and 12 µg/ml respectively, which are the doses at which FU killed 50% of the cells. Whereas, VC did not attain 50% cell death even at 1000 µg/ml, which indicates the cytoprotective potential of VC. When the HEK293 and HELA cells were treated with VC after FU, there was an improvement in cell viability by 40%, and 50% respectively, which means VC protected the normal cells and cancer cells from FU induced damage.

Conclusion: VC has shown cytoprotection against FU induced toxicity in both normal and cancer cells, but protection is more in cancer cells. Future studies will be focused on identification of protective compounds and to restrict the protection only to normal cells.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 63: PALLIATIVE CARE NEEDS IN HOSPITALIZED PATIENTS IN A REGIONAL CANCER CENTRE IN NORTH INDIA: A PILOT STUDY

Mohd Yunus Khilji 1, Shahnaz Chandad 1, Raj Kumar Nirban 1

Introduction: Palliative care services are vital for the patients suffering from cancer as they improve quality of life of the patient as well as caregivers. In India, these services are not developed fully and there is immense need of setting up of palliative care departments at every level of health system.

Objectives: To assess palliative care needs in terms of diagnosis, symptoms and care needs; to analyze relationships between symptoms/care needs and diagnoses in hospitalized patients in a Regional Cancer Centre in north India.

Methods: An observational pilot study was done on 200 patients admitted over two months in various departments of a RCC.

Results: Most common cancer was head and neck followed by lung, cervical, breast and gall bladder cancers. Most common symptom was pain in more than 50% patients. More than 80% patients showed non pain symptoms, either single or multiple, among which lack of sleep, lack of appetite and fatigue were common. Among all patients, only 5% were referred to our palliative care clinic.

Conclusion: There is big gap between need and availability of proper palliative care services in many cancer hospitals in India. Symptoms were not associated with any specific disease, so a policy should be made and implemented on institutional levels to refer patients for palliative care if there is a symptom based care need. Further detailed multicenter studies are required to evaluate the needs further.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 64: FELT NEEDS AND EXPERIENCES OF PROFESSIONAL CARE PROVIDERS WORKING IN CANCER PALLIATIVE CARE CENTRES

Amanpreet Kaur 1, Mahendra P Sharma 1, Santosh K Chaturvedi 1

Introduction: The job of professionals who provide care to terminally ill or dying cancer patients could be both challenging as well as rewarding. Most studies suggest that they are at an increased risk of developing burnout, secondary traumatic stress, and grief. There has been very less work done on developing practical interventions based on the needs and challenges perceived by this population. Thus, it becomes important to study and address these needs as they are the entity responsible for providing better care to patients and their families.

Methods: Objective was to explore felt needs and experiences of the professional care providers working in cancer palliative care centres. Cross-sectional exploratory methodology was adopted to study the felt needs. Purposive sampling method was used to recruit 15 professionals (doctors, nurses, counsellors, and social workers) from four different cancer palliative care centres in Bengaluru who had given the written informed consent for the semi-structured interviews as well as audio recording for the same. The interviews were transcribed and thematic analysis was carried out.

Results and Conclusion: Broadly emerging areas on the interviews were: mixed emotions, compassion fatigue and satisfaction, difficulty dealing with children's death, negative affect and helplessness. The needs, challenges and helpful factors will be discussed in the presentation in detail. The findings are suggestive of need to understand the felt needs of this population and developing an intervention program to promote their personal and professional fulfilment.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 65: CORRELATION OF PERFORMANCE STATUS WITH VARIOUS COMPONENTS OF TOTAL PAIN IN CANCER PATIENTS IN A TERTIARY CARE HOSPITAL IN INDIA

Suraj Pal Singh 1, Aanchal Satija 1, Sushma Bhatnagar 1

Introduction: Performance status has been used in cancer pain research to examine its relationship with cancer symptoms, predictive ability of adequate pain management and usefulness as an indicator of pain treatment. There is a paucity of research exploring the relationship between performance status and various component of total pain.

Objective: To determine the relationship between Eastern Cooperative Oncology Group (ECOG) performance status and various components of total pain in cancer patients.

Methodology: Observational study conducted at pain and palliative care clinic in Dr B.R.A. IRCH, AIIMS, New Delhi, India. Cancer patients attending pain clinic for the first time were recruited in the study after obtaining informed consent. ECOG was documented as 1-Fully active, 2-Capable of right activity, can take self care, 3-Restricted activity in bed for <50% of time, 4-In bed for >50% of time, 5-Completely bedridden, 6-Dead. Statistical analysis was done by spearman correlation. Continuous variables were compared among the groups by one way ANOVA followed by postdocs’ comparison using Bonferroni test.

Results: 300 patients were recruited out of which 56.33% were male. Only 34 patients (11%) were <30 years of age, 107 (36%) aged between 31-49 years and 159 (53%) were >50 years. ECOG performance status was significantly correlated with physical pain (p value = 0.0001), spiritual pain (p value = 0.02). No significant correlation was seen with social pain (p value = 0.0657) and emotional pain (p value = 0.307).

Conclusion: Patients with higher ECOG performance status have more physical and spiritual pain. This study highlights the role of spiritual care also for total pain management.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 66: SPIRITUAL CARE AND THE WAY OF YOGA

Prateek Katara 1

Introduction: Over the last many decagon, The spirituality has come to the public minds. With the break of a new era, spirituality has analysed in many places and more discussion in the workplace, in politics, and in Healthcare. With the more evidence the medical science address the connection between spirituality and health is becoming widely recognized as more people want spiritual content to their health care. Yoga is a science which is multicultural in our daily life. It works in all the all angle of life: the physical, social, psychological and spiritual. The word YOGA means unity or oneness and derived from Sanskrit word “YUJ.”

Objectives: Most people between us are not know that the problems in our lives are related with spiritual problems 70% of the time. The problem has a spiritual root cause can be identify with activated sixth sense. Today there are many institute working on spiritual care but there is to much ignorance about existence of spirituality, many a time people don’t know the difference between spirituality and religion. Yoga and meditation is the only way in today life which is the path to know spirituality and solve the problems in life. The ignorance of yoga and spirituality give rises to many problems. The problems are different for each of us: It may be financial, It may be unsatisfied in personal relation, It may be family issues, working issues etc.

Methods: Today in our lives our whole day is spent in doing or getting something that give us immense pleasure and happiness as much we are getting something it give us immense pleasure. The problems can be solved in five ways: The ostensible way: By diverting mind. Religion: The path of god. Yoga: Concentrate mind and gives physical fitness. Moksha: Path of getting rid of problems completly.

Results: Spiritual awakening opens a door to a place of no boundaries. Awareness finds itself spreading forever in a warm and very accepting space. Meanwhile we are living in a world full of boundaries. From personal boundaries to international borders, our everyday world is all about boundaries. From a reality of spreading seemingly forever in a great peace, people who have had a spiritual awakening find themselves back into a world of fences, defenses, rules and expectations.

Conclusions: The spiritual realm is one of unconditional, an overwhelming love. Almost by definition a spiritual awakening is to find love and more love, an intimacy beyond words. Meanwhile we live in a world where love can be a one night stand, what we do or don’t do for one another. Love is rarely without some condition. We live in a world where judging others is much more common then finding the humility to look inward at ourselves and find kindness and compassion for all. The great difficulty in the fulfilment of the requirement in yoga is our inveterate belief in the substantiality and reality of things as they appear to our senses. The world is as much real in itself as a cloth is real, independent of the threads. There is a network of relations which makes the world appear as real. The world is not exactly as it appears to our eyes.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 67: SIGNIFICANCE OF COOLING PRANAYAMA DURING AND POSTCHEMOTHERAPY AND RADIATION

Mili Baruah 1, Raghavendra R 1

Introduction: When battling cancer, the worst part is not just the disease it is much more than that. Patient experience lot of discomfort and fatigue during chemotherapy and radiation, Certain types of cancer treatments can cause hot flashes and night sweats which can create lot of discomfort. Although hot flashes and night sweats are more common in women, they can also occur in men. Some people continue to have these side effects after cancer treatment. Yoga has become very popular along with the conventional treatment and by practicing certain cool breathing exercises patient can reduce the occurrence and intensity of hot flashes, and begin to restore a sense of control.

Objectives: Provide and support cancer patient during and post treatment and explain the benefits of practicing yoga which can increase the quality of life.

Methods: Different types of cool breathing exercises practiced to deal with chemotherapy and Radiation side effects.

Results: Participants expressed a positive response for the service.

Conclusions: Mind body service is needed for cancer treatment along with conventional treatment. It is a holistic way in the process of healing and betterment of the patient wellbeing.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 68: ROLE OF YOGA BREATHING FOR THE TREATMENT OF INSOMNIA DURING CHEMOTHERAPY

Mili Baruah 1, Meera Raj 1, Michelle Norman 1, Esther Sathiaraj 1, Raghavendra Ramanjulu 1, Anthony Pais 1

Introduction: Insomnia and sleep quality impairment are among the most prevalent and distressing problems reported by cancer patients and survivors. Many cancer patients, between 15 to 90%, report some form of insomnia or sleep quality impairment. Causes can be due to hot flashes, night sweats, excessive daytime napping, and difficulty falling asleep. Research suggests yoga breathing is a well-tolerated exercise intervention with promising evidence for its efficacy in treating insomnia among cancer patients during chemotherapy.

Objectives: A pilot study was performed to evaluate the effects of yoga breathing for treating insomnia among cancer patients during chemotherapy.

Methods: This pilot trial comparing yoga breathing exercises to usual care included patients receiving chemotherapy. The interventions consisted of 6 breathing techniques to be practiced at home. The control group received usual care during their cycles of chemotherapy. This is one of the first studies done among Indian patients investigating yoga and sleep using a validated measure of sleep quality impairment with defined clinical cut offs (Validated Sleep Index).

Results: Sixteen participants were included and the results demonstrated that any increase in pranayama dose, with dose measured in the number of minutes practiced, resulted in improved sleep quality.

Conclusions: Yoga breathing was a feasible intervention among patients with cancer receiving chemotherapy. A dose-response relationship was found between pranayama use and improvements in insomnia. Mind body service is needed for cancer treatment along with conventional treatment for improved quality of life.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 69: SELF-AUDIT OF A PALLIATIVE CARE FACILITY IN A CANCER HOSPITAL

Anjna Surath 1

Objective: A self audit was done to evaluate the standards of palliative care (PC) in this cancer hospital with reference to palliative care standards recommended by ASCO guidelines published in JCO, Jan 2017 and standard audit tools for Indian Palliative care program. Aim is to improve the quality of care, explore possibility of starting a training program and convince administration to improve of service.

Materials and Methods: Retrospective Data was collected. Inclusion criteria were more than 6 visits or more than 6 mths follow up or min 4 visits if rapid decline in performance status. Parameters analysed were pain and other symptoms, ADL, effect of counselling and communication, hospitalisation and caregiver satisfaction from 70 case histories. Cancer stage, current oncological therapy and performance status were used as default criteria for early or late referral.

Results: Scores were (i) ASCO guidelines for PC alongside oncology care standards were met by 50% (ii) essentials of PC implemented up to 85% (iii) Indian essential standards by 50% and (iv) Indian desirable standards by 35%.

Conclusions: We need to improve referral pattern during oncology treatment, need to organise a team and start home care system to achieve comparable standards of palliative care.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 70: ENABLING HOME BASED PALLIATIVE CARE: A CASE STUDY

Neeti Rustagi 1, Shubham Manchanda 1, Shilpa Jangir 1, Shruti Soni 1, Shivank Choudhary 1, Pankaja R Raghav 1

Background: A 54 year old male suffering from cerebellopontine angle tumor for last 12 years was advised surgery as main modality of curative option. Patient opted multiple alternative forms of care over curative care because of previous incident of losing a near one on surgery table. This case study explores the dimensions of providing appropriate palliative care, existing challenges and effective measures in addressing those challenges to provide home based palliative care. The main aspects of home based palliative care are focused upon providing supportive care, enabling patient and care givers to make their decisions regarding choice of treatment, location of care and establishing empathetic physician patient communication. Further, this case study also highlights the role of primary care physicians in bridging the gaps between demand and supply regarding institutionalizing home based palliative care.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 71: AUDIT BENCHMARKING 30-MORTALITY FOLLOWING PALLIATIVE SYSTEMIC ANTI-CANCER THERAPY FOR SOLID TUMORS IN PATIENTS RECEIVING PALLIATIVE CARE UNDER CANCARE FOUNDATION

Shafika Banoo 1, Ramanan SG 1

Introduction: A considerable number of cancer patients receive inappropriate chemotherapy at end of life. In 2008 the National Confidential Enquiry into Patient Outcome and Death had recommended regular audits of 30-day mortality for chemotherapy patients. Even though there are no comparative benchmarks in India, there is an unmet need to review futile chemotherapy given in end of life to palliative patients.

Objectives: The main aim of our audit was to analyze the appropriateness of the decision to treat with SACT in a Palliative patient and Continuous Clinical audit to improve quality of care for our palliative Oncology patients treated by MCCF and registered with Cancare Foundation.

Methodology: We retrospectively audited 30-day mortality of all palliative patients (n = 146) aged 6 yrs and above who received SACT for solid tumors between1st January to 31st December 2016. The data was analyzed using descriptive statistics.

Results: 21 patients received (14.5%) received SACT 30-days prior to their death.

Conclusion: 14.5% of our palliative patients who received SACT died within 30 days. This is higher than statistics reported in Royal Marsden (8.1%) and Nottingham City Hospital 2011 (1.9%). This audit has been a revelation for us to improve our practice. We aim to reform these statistics to below 5% in follow-up audits by reducing the number of futile chemotherapy and implement early integration of palliative care for our Oncology patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 72: PATIENT NAVIGATION ENHANCES THE OUTCOME OF PALLIATIVE CARE: CASE STUDIES

Soumyadeep Chakraborty 1, Rita Mukhopadhyay 1

Introduction: Palliative care in the broader sense at present is to improve quality of life for both the sick person and the family. This type of care is not confined to the terminal illness anymore. The term Patient Navigation (PN) was coined in the US to guide patients through the cancer care continuum, and it made a remarkable difference to improve quality of life. The goal of Ilajit Memorial Trust (IMT) is to navigate patients through the complex labyrinth of health care system to ease suffering for them and their families irrespective of the medical prognosis. A sick person and his/her family is a ship lost, scared, and helpless in the ocean of sickness. As, a ship with an expert captain is lost without a navigator so does a patient and his/her family without a patient navigator. We at IMT navigate patients to identify and remove barriers such as financial, emotional, social and communicational and thereby closing the healthcare gap.

Objectives:

  • Education and counseling for patients and their families during screening, diagnosis, treatment and compliance

  • Identify and remove barriers (financial, emotional, social, communicational) to improve the quality of life for both patient and caregiver.

Methods: One to one counseling leading to treatment progression and compliance.

Results: IMT has been navigating 28 patients successfully since its inception in March 2017. IMT also navigated bereaved caregivers to find a closure. Individual cases will be discussed.

Conclusions: PN enhanced the quality of patient care, and compliance.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 73: STRATEGIES USED FOR FAMILY BASED COUNSELING AND ITS IMPACT ON PEOPLE LIVING WITH HIV

Divya Sarma 1, Sulekha K 1, Kamalakshi Kammar 1, Prabhu N Katti 1, Sridevi 1, Paramesh Gorkhal 1, Sanghamitra Iyengar 1

Introduction: Conflicts within the families of people living with HIV can cause emotional pain, which contributes to the distress of both patients and family members.

Objectives: This paper investigates the strategies used in family based interventions for patients living with HIV in acutely ill phases, and its impact on the pain and emotional distress.

Methodology: Detailed case review of 10 patients who received extensive family based intervention from Asha Jyoti Palliative Care Centre for People living with HIV in Koppal, was undertaken to understand strategies used in family intervention and its impact.

Results: Attitudes towards perceived behavior leading to transmission, anger over patients past or current behavior, feeling of guilt among patients as well as changes in patient behavior due to disease progression led to conflicts and distress among patients and family members. Strategies used to address these were psychoeducation, family-based counseling to explore roots of conflict and reframe expectations from each other, and acknowledging and accepting family members feelings and appreciating their caregiving efforts. This resulted in changes in behavior in both patients and family members.

Conclusions: Family support is critical for people living with HIV, but in some cases, patients’ behavior and relationship with family members affects the kind of care and support from the family. Family based interventions can help in addressing these issues which can strengthen the family's commitment to care and this decreases the emotional pain of the patient.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 74: IMPROVING PALLIATIVE CARE OUTCOMES THROUGH TRAINING AND SUPERVISION OF HOME HEALTH CAREGIVERS USING A MULTIDISCIPLINARY TEAM APPROACH IN URBAN SETTINGS

Soma Bhattacharjee 1, Rana Mukherjee 1, Maitreyee Bhattacherjee 1, Aloka N Dalal 1, Shrikant Atreya 1

Introduction: Nursing resources available for Home based Palliative Care in Eastern India are severely limited. The available workforce can be retrained for improved care delivery using a scalable layered supervisory model.

Objectives: Improving Palliative Care at Home through Home Health caregivers trained and monitored by a multidisciplinary team consisting of a Palliative Care Specialist, a General Physician, experienced Nurses and a support team of Physiotherapists, Psychologist and Dietician.

Methods: Evaluation of awareness was done by selecting five specific nursing skills – Giving relief from Pain, Feeding, Maintaining Skin Integrity, Ensuring Comfort and Engaging through Communication, amongst over 200 trained Home Health Aides (HHA) and they were graded based on their knowledge and experience. They were then trained on these skills and a re-evaluation was done 6 months later. Evaluation of care delivery was done by taking feedback from the treating clinician, supervising nurse, and family for over 100 patients receiving Home based Palliative Care for varied terminal illnesses including COPD, Dementia, and Neurological Disorders besides Cancer.

Results: Good Pain control, maintenance of Nutritional status, Infection control and Prevention of Hospitalisation were reported as outcomes but families were mostly unable to accept the principles of Palliation despite repeated counselling.

Conclusions: Palliative Care delivery at Home can be done successfully in spite of limited manpower, through HHAs with intermittent retraining and continuous monitoring by a multidisciplinary team with a focus on the Principles of Palliative Care.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 75: PALLIATIVE CARE DEVELOPMENT PROCESS IN A MEDICAL COLLEGE HOSPITAL IN PUDUCHERRY

Srikanth S 1, Latha S 1, Vanitha P 1

Introduction: Presently in India, cancer and other non communicable diseases have emerged as major public health problems. The care provided to these chronic disease patients is mostly disease oriented. The patients live longer with poor quality of life. There is a huge need for palliative care of such patients. Literature states that less than 3% of patients have access to palliative care. Palliative care units are being established in Puducherry by various organizations. We describe the development process of our unit in a medical college hospital.

Methods: The palliative care unit was established in January 2016 under a palliative care trained doctor and 3 nurses. Sensitization programs for nurses, doctors and field workers were conducted. A comprehensive palliative care (medical, psychological, social and spiritual needs) was provided to the patients through outpatient, inpatient services and home visits.

Results: Fifty eight patients received care in the last one year of whom 73.6% were cancer patients (males 46.5% and females 53.5%). The median age of the patients was 50 years. Various types of cancer were observed. On an average, there were two admissions per patient. The median duration of stay was 7 days. One day sensitization programs were conducted for 134 nurses, 70 doctors and 28 field workers.

Conclusion: The patient load is less as there is no oncology department in the hospital. All patients had been referred by hospital staff and field workers. Capacity building of health professionals, volunteers and innovative IEC activities are needed to improve access to needy patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 76: PALLIATIVE HOME CARE: WHAT APPROACHES SUITABLE FOR DHAKA, BANGLADESH

Shahinur Kabir 1, Sazia Afrin 1, Rifat Akhter 1, Sonali Nandi 1, Mobashshera Jannat 1, Farjana Akhter 1

Background: The incidence of Cancer in Bangladesh is 200,000 new patients per year. Among them 180,000 patients are at advanced stage of cancer. The prevalence of HIV is less than 1%. Overall 600,000 adults and 29000 children suffering from various non-curative diseases need Palliative Care at any time in Bangladesh. However, only less than 1% population currently have access to Palliative care and pain treatment. Considering the economic circumstances and the comfort of being surrounded by the family members’ home care became an important alternative for patients who needed palliative care.

Objectives: To explore approaches that are suitable for home care and discuss payment based service and charity based service. The second objective is to analyse the challenges of home care and explore ways to overcome the challenges.

Method: Two retrospective studies have been conducted to address the objective of the study. Data is based on patient's record. The study has included two groups of patients. In total of forty (40) patient's records are obtained from Hospice Bangladesh. These patients have received palliative home care from Hospice Bangladesh from January 2017 to July 2017and paid for the services they have received. The second group is consisting of Twelve (12) patients who received Palliative home care from July 2016 to July 2017 at free of cost from the charity Aastha Hospice. It is the first charity Hospice care in Bangladesh. Both groups have males and females patients who are at incurable stage of their respective disease. Data is collected from patients’ register book and bed head tickets. We have used descriptive analysis to discuss our findings.

Results: All of our study population who have received services from Hospice Bangladesh have lived in Dhaka metropolitan area. Majority of the patients’ age are over 60 years. Among the patients’ 53% are females and 46% are males. All patients are married except for one who is a child. All patients are Muslim. Half of our study patients (50%) are suffering from cancer. Among other diseases - neurological disorder is found in 25% of the patients, cardiovascular problem is found in 7% patients and renal diseases is found in 17% patients. From the beginning of the home care 39% patients are suffering from pain and breathlessness. Other health problems are hypotension (17%) and cough (3%). These patients are referred to palliative home care by doctors (35%), patient's attendants (32%), and friends and relatives (32%). Those who have died during the study period, 46% of them died at home and 21% in the hospital. At present, 32% of our study patients are alive. The medical team of Hospice Bangladesh have managed the pain of the most of the patients (80%) effectively. These patients have received pain management treatment at home. The most benefited part of the palliative home care was reducing the hospital readmission (80%) and reduce the economic burden (60%). However, there are numbers of challenges. Among the challenges shortages of the nurses and economic burden of the care for long term patients are most acute and needed to be addressed soon.

Our analysis of second group of population who have received free hospice services from Aastha Hospice are cancer patients. Among these patients 98% patients have lived in Dhaka. The demographic characteristic indicates among these patients 60% are females, 40% are males, and 10% are children. Majority of these patients (60%) have suffered from pain. Other physical suffering includes, shortness of breath (20%), anorexia (5%) and bed sore (5%). All have died at home. The main challenge that Aastha Hospice medical team have experienced are lack of family care givers, lack of education of the family care giver which made managing emergency situations difficult.

Our preliminary research findings match with the findings of the existing research on pain. The existing research of hospice and palliative care suggest that burden of pain is highest among poor patients. Aastha Hospice patients are poor. A cost-effective service has been designed for them, where they receive pain medicine at free of costs but the nurses and doctors visit is limited. Hence, if the family care givers do not have good understanding of pain management, such as when to give the medicine, the patient suffer from pain despite the pain medicine. On the contrary, as the Hospice Bangladesh's patients could pay for 24 hours nurse and frequent doctor visit the pain was managed for majority patients on time successfully.

Conclusion: Palliative care in developing countries has a special role during the disease trajectory for both cancer and non-cancer patients and their families. There are a number of challenges that still make access to palliative home care almost impossible despite the need.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 77: ANTIBIOTIC PRESCRIPTION PATTERN FOR FOLEYS CATHETARISED PATIENTS IN A PALLIATIVE CARE CENTRE: A RETROSPECTIVE ANALYSIS

Dejitha Das 1, Sheeba 1, Seena Munaff 1, Sunil Kumar 1

Introduction: TIPS take care of many patients who require chronic Foley's cathetarisation. It has seen that some centres practice prophylactic antibiotics for prevention of catheter associated urinary tract infection (CAUTI). We have adopted a policy to avoid routine antibiotic prophylaxis for Foley's cathetarisation since January 2016.

Objectives:

  • To assess the adherence to institutional antibiotic administration policy

  • To estimate the number of patients received antibiotics during the study period and whether antibiotics are administered empirically or after confirmation of CAUTI.

Methods: A retrospective analysis of case sheets of all patients with Foleys cathetarisation registered for palliative care at TIPS during the period from January 2017 to September 2017 and tabulated the data.

Results: The results of the study have been detailed in Table 1

Table 1.

Study Variables and Number of patients

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Conclusions: We have not administered antibiotics prophylactically for preventing CAUTI. Only 40% of the patients developed CAUTI during the study period.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 78: PROFILE OF PATIENTS RECEIVING PAIN AND PALLIATIVE CARE SERVICES AT A TERTIARY CARE HOSPITAL IN PUDUCHERRY

Muruganandham R 1, Vinayagamoorthy V 1, Suguna E 1, Dongre AR 1

Background: Since last two years, the Department of Community Medicine in collaboration with Department of Anaesthesia in Sri Manakula Vinayagar Medical College (SMVMCH) Puducherry is running a ‘Pain and Palliative Care’ clinic (PPC) in hospital setting with component of community support.

Objectives: To study the demographic and clinical profile of patients utilising PPC services and to identify the patient's awareness and prognosis about their disease conditions.

Materials and Methods: A case record based cross-sectional study was conducted among the patients who were seeking care from the PPC for the past two year. PPC care is being provided by a team of doctors, nurses and medical social workers who are trained in palliative care. Patient's structured case records included information on age, sex, referral department, signs and symptoms, diagnosis and their awareness and prognosis about their disease conditions recorded at the time of consultations. These records are maintained by doctors posted at PPC. Consent waiver to analyse secondary data from these records was obtained from Institutional Ethics Committee of SMVMCH. Data were entered in EpiData Manager (version 4.2) and analysed in EpiData (version 2.2).

Results: Out of 87 patients registered at PPC, 39 (44.8%) were males and 48 (55.2%) were females with the mean age of 51.52 years (+18.26SD). Among them 70 (80.5%) were residing at rural setting and 61 (70.1%) belonged to below poverty line. Eighty four (96.6%) patients had pain with mean pain score of 7.05 (+ 2.7SD). Most of these patients were referred from six clinical specialities of SMVMCH. Most of them 19 (21.8%) had malignancy related to gastrointestinal (GI) system. About 54 (62.1%) of them aware of their disease condition and 48 (55.2%) were aware of their prognosis. Nine (10.3%) of them were receiving support from the local community.

Conclusion and Recommendations: Majority of patients were rural poor. PPC team dealt with pain and patient's poor awareness of their disease conditions and prognosis. Only nine of them were receiving community support. PPC team should be ready to deal with pain and patient counselling. PPC team would require making their services pro poor and available in local community setting.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 79: ANALYSIS OF SPECTRUM OF DISEASES IN A PALLIATIVE CARE UNIT IN SOUTH INDIA

Seena Munaff 1, Dejitha Das 1, Sheeba 1, Sunil Kumar 1

Introduction: WHO states all life threatening illness requires palliative care and in 2017 WHO stress that majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%) and diabetes (4.6%). Many other disease like kidney failure, chronic liver disease, multiple sclerosis, Parkinson's disease, rheumatoid arthritis, neurological disease, dementia, congenital anomalies and drug-resistant tuberculosis also need palliative care.

Objectives:

  • To understand the trends of patient population registered under TIPS

  • To understand the various non-cancer diseases under Palliative Care

  • To know the case trends registered under TIPS reflects WHO statistics.

Methods: A retrospective analysis of case sheets of patients registered from January 2014 - December 2016 and segregated them into cancer and non-cancer diseases.

Results:

  • Total cancer patients registered - 3203 (61.7%)

  • Total non-cancer patients requiring Palliative Care - 1985 (38.3%) [Table 1].

Table 1.

Number of non-cancer patients requiring Palliative Care

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Conclusions: The non-cancer patients seen by us are less compared to the estimated need by WHO. This may be due to multiple reasons including lack of awareness regarding Palliative Care among professionals and public. The gaps between WHO statistics and TIPS indicates the challenges and misconceptions about palliative care in chronic non-cancer diseases.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 80: TRANSITION OF MINDSET AFTER ATTENDING HOME BASED PALLIATIVE CARE SERVICES

Prashant Sirohiya 1, Sushma Bhatnagar 1, Seema Mishra 1, Rakesh Garg 1, Nishkarsh Gupta 1, Vinod Kumar 1, Sachidanand Jee Bharti 1

Introduction: Teaching of palliative care in undergraduate and postgraduate curriculum is inadequate or lacking. Anesthesiologists are skilled in assessment and management of variety of symptoms that are common in patients of palliative care like pain, dyspnea, nausea and vomiting but clinical context and treatment approach differs in perioperative and palliative care settings. Anesthesiologists, who are in palliative care training should focus and emphasize on effective communication and concept of total pain. Due to patient burden in palliative care clinics, by virtue of limited time, trainees might miss some distressing symptoms of patients which could be addressed in home care visit due to sufficient time and homely environment of patient. In some patients, due to clinically significant morbidities, they couldn’t wait in long queues of hospitals. Few NGO's work for these group of patients and provide them comprehensive home based palliative care services.

Methods and Results: This is a one month study with home based palliative care team in which total number of patients seen were 86 (age range-10 years to 84 years). Cancer patients were 81 and Non-Cancer patients were 3. Good communication with patient and their family, symptom assessment, total pain management, review of medicines was done in all patients, wound dressing done in 6 patients, foleys catheter insertion was done in 1 patient and bereavement care was done for 3 families. Average time for each visit was around 45 minutes. After attending home care services, it was evident that palliative care should not be characterized as end-of-life care. It has been rather associated with enhanced patient care, facilitation of understanding diagnosis and prognosis with better symptom control and improved quality of life. Home based palliative care improved effective communication and psychosocial support, increased number of home deaths and decreased needless hospitalization.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 81: ILLNESS ATTRIBUTION, PHYSICAL AND PSYCHO-SOCIAL CONCERNS OF ASIAN PEOPLE WITH MULTIPLE SCLEROSIS IN UK

Tushti Bhardwaj 1, Jonathan Koffman 1

Background: Multiple Sclerosis is a chronic neurological condition with onset among young adults especially women. With growing number of Asian population in UK, concerns are raised to understand their issues in cultural perspective and how they attribute meaning to their illness as cultural beliefs affect patient's perception of health delivery system.

Objectives: (i) To explore the meanings Asian PwMS attribute to their illness, (ii) To explore the physical and psycho-social concerns of Asian PwMS and associated impact on their life.

Methods: Qualitative data from purposive sample of 9 Asian MS settled in London, collected through in-depth face-to-face interviews guided the present research. Framework method was used for addressing issues of rigour and making analysis procedure transparent.

Results: Stress, destiny and punishment of wrong deeds were identified as major theme. Respondents believed that hectic and demanding life-styles and extreme changes contributed to onset of their disease. Changes in life and dependency were two major themes characterizing living with MS. Strong faith in God was reflected and religion provided emotional strength, peace and energy especially during the emotionally up-setting periods.

Conclusion: Though MS affects life of Asian people but suppressing culture and unhealthy attitude of significant others make it more difficult. This suggests need of family centred approach for management of MS and educating relatives and friends of MS patients. Based on UK experiences, implications for future research in India are extended especially RCTs for development of family centred and exercise-based intervention programmes.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 82: STUDY ON PAIN MANAGEMENT IN CANCER PATIENTS REGISTERED WITH ROMILA PALLIATIVE CARE FROM JUNE TO SEPTEMBER 2017

Ann Mattam 1, Hazel Tauro 1, Pouruchisti Wadia 1

Introduction: Romila Palliative Care, Mumbai, an initiative by SNEHA, was launched in the month of January, 2017 with the objective of reaching out to patients in need of palliative care, especially the socially disadvantaged population. Our services include outpatient and home based care and till 30th September we have reached out to 113 patients. 82 % of our patients have cancer. This study of pertains to 64 patients registered from June 2017 to September 2017.

Objective:

  1. To critically assess our pain management techniques

  2. To evaluate the outcome of palliative care treatment on Cancer patients reporting pain.

Methods: The population being small all the patients in pain were included in the study. Pain was assessed using the Numerical Rating Pain Scale and PQRST pain assessment method. Close monitoring was done telephonically and through personal visits.

Results: 33 patients (52%) reported pain. Out of 33 patients, 22 received morphine and 11 received step 2 drugs. We were able to achieve adequate pain relief for 11 patients on Morphine and 11 patients on step 2 drugs [Figure 1].

Figure 1.

Figure 1

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Breakup of type of pain management treament received

Conclusion: Our project is at a nascent stage and hence the duration of our study period is short and the sample is comparatively small. However our objective is merely to access our performance, help us to do a continuous review and understand the lacunae involved to achieve optimum pain relief.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 83: NEED FOR A PALLIATIVE CARE APPROACH IN ACUTE STROKE

Bhuvaneshwari B 1, Priya Treesa Thomas 1

Background: Stroke is one of the leading causes of death and disability in India. According to a recent population based study the incidence rate was found to be 119-145/100,000. Yet very little is done to understand the palliative care needs of this population.

Aim: To explore the need for a palliative care approach in acute stroke.

Design and Setting: Three patients with acute stroke having a long hospital stay were studied. The interviews with the patients and their families were analysed using thematic analysis.

Results: The ambiguity of prognosis and the fluctuating course of the illness significantly impacted the family. The communication of poor prognosis to the family impacted their coping with long hospital stay. Financial issues and poor availability of resources also affected the patient's quality of life and family's ability to cope.

Conclusion: Stroke is a medical emergency that leads to significant morbidity and mortality. The patient and family experience significant loses through the process of treatment. A palliative approach in stroke can lead to a significant improvement in the quality of life of both patient and family.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 84: TO ASSESS THE PREVALENCE AND PREDICTORS OF FATIGUE AND ITS IMPACT ON QUALITY OF LIFE IN ADVANCED CANCER PATIENTS RECEIVING PALLIATIVE CARE

Shilpi Agarwal 1, Rakesh Garg 1, Sushma Bhatnagar 1, Seema Mishra 1, Nishkarsh Gupta 1, Sachidanand Jee Bharti 1, Vinod Kumar 1

Introduction: Cancer-related fatigue (CRF) has been defined as ‘‘a distressing persistent, subjective sense of physical, emotional and cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning. Fatigue can have an immensely negative impact on patients’ Quality of Life (QOL). There can be many contributing factors of fatigue in cancer patients such as patient demographic characteristics, comorbid conditions, anaemia, low albumin etc. Despite its high prevalence, there are few studies in Indian population on prevalence of cancer related fatigue and its predictors in advanced cancer patients receiving palliative care.

Objectives: We aim to find the prevalence and predictors of fatigue and its impact on quality of life in patients with advanced cancer receiving palliative care.

Methods: This cross sectional descriptive study was conducted in the Department of Onco-Anaesthesia and Palliative Medicine after approval of the institutional ethical committee. All adult (age >18 yrs) patients with advanced cancer receiving palliative treatment and has been denied any curative treatment with ECOG score ranging from 0 to 3, predicted survival of >4 weeks were included in the study. The data was collected on a standard proforma which included demographic details, nutritional status, any co-morbidities, investigations like hemoglobin, albumin and serum electrolytes etc. The study parameters like fatigue, quality of life and symptom assessment was done using FACIT F, EORTC QLQ C - 15 PAL, ESAS r respectively. Data was expressed as Mean +/- SD or number or percentage as appropriate for the quantitative and qualitative variables. To measure correlation between Facit F score and Quality of life (Global Health Status) and predictors of fatigue Pearson correlation or Spearman rank correlation were used as required.

Results: Out of 23 patients, 11 were male and 12 female. The mean age was 46.6 +/- 13.5. The mean BMI was 20.2 +/- 4.4. Most common cancers were gastrointestinal (26 %) and genitourinary (26%), Ca breast (13%), Ca lung (13%), head and neck (8%). Most of them received either chemotherapy or radiotherapy. Mean Hb was 9.8 +/-2.3 and mean albumin was 3.3 +/- 0.75. The most common symptoms were tiredness, lack of sleep, pain, depression and anxiety. The mean FACIT F score was 14.95 +/- 8.6 and the FACIT F score <30 (severe fatigue) was found in 22 patients. The mean Quality of life score (Global Health Index) was 23.91 +/- 23.47. There was significant correlation between FACIT F score and Quality of life score (P = 0.0001). The subjective symptom of tiredness was significantly associated with FACIT F score (P = 0.003).

Conclusion: Based on preliminary data of the study and existing literature, the prevalence of fatigue appears to be high in advanced cancer patients receiving palliative care. Various possible predictors of fatigue like anaemia, low albumin, symptom burden such as pain, sleep disturbances, depression exists but symptom of tiredness is significantly associated with fatigue. However a larger sample size is required to further assess the other possible predictors of fatigue in advanced cancer patients so that comprehensive palliative care and multimodal interdisciplinary approach can decrease the symptoms of fatigue.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 85: TO DETERMINE THE FINANCIAL BURDEN IN PALLIATIVE CARE PATIENTS ATTENDING A TERTIARY CARE CENTRE

Mahima Gupta 1, Nishkarsh Gupta 1, Sushma Bhatnagar 1, Sachidanand Jee Bharati 1, Rakesh Garg 1, Vinod Kumar 1, Seema Mishra 1

Background: Cancer is a global epidemic and India's cancer burden is expected to nearly double in the next five years. The financial difficulties faced by the cancer patients especially at an end stage disease in India are grossly underestimated. Moreover the patient's finances and their health care policies (if present) are exhausted when they reach palliative care (PC) clinic. The studies measuring financial distress in PC patients are limited.

Aims: This observational study was conducted at Palliative Medicine Ward at IRCH, AIIMS from Nov 2018 to Feb 2018 to determine the financial distress among the patients coming to PC.

Methodology: All patients aged (18-70 yrs) suffering from any form of carcinoma who had completed the treatment and consulted the PC physician were included after their consent. The patient's financial worries and distress were measured by an interview based questionnaire. All the patients with cognitive dysfunction were excluded.

Results: The patients in our study were from all economic strata. 67.74 % patients were non dependent on their family before the diagnosis of the cancer while, 87.7 % lost their jobs after diagnosis. None of them had a health policy covering the cost of the treatment. Since patient was the only bread winner in most of the cases, the loss of income lead to use of savings, mortgaging/selling of valuables and setting up a vicious circle for the patient and his family. Majority of cancer patients experience inevitable financial difficulties which is difficult to estimate and manage but adds significantly to their distress.

Conclusion: Our study suggests that estimation of financial needs and setting health care policies is the need of the hour to provide a holistic care to the patient as well the caregivers as a part of bereavement care.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 86: SYMPTOM PREVALENCE IN PATIENT WITH ADVANCED HEPATOBILIARY CANCERS: A RETROSPECTIVE AUDIT CONDUCTED AT A TERTIARY CARE CENTRE

Pallavi Singh 1, Avinash Kumar Tiwari 1, Arunangshu Ghoshal 1, Jayita Deodhar 1, Anuja Damani 1, Naveen Salins 1, Maryann Muckaden 1

Introduction: The study of symptom clusters is gaining increased attention in Hepatobiliary cancer (HBC) in palliative care to improve the Quality of Life of patients diagnosed with advanced cancer. This is a retrospective study of symptom profile of advanced hepatobiliary cancers referred to palliative care outpatient clinic at their initial presentation using Edmonton Symptom Assessment Scale (ESAS).

Objectives: The aims of the present study were to:

  1. Determine the distribution of symptoms using ESAS in patients with advanced HBC referred for palliative care

  2. Identify the symptoms cluster in patient with advanced HBC.

Methods: Study design: observational retrospective review of charts filled routinely for preliminary assessment of patient's between1/11/2016 to 31/10/2017.

Inclusion criteria - Patients with advanced HBC, age: 18 -80 years, ECOG 1-4, referred to palliative care Outpatient clinic in a tertiary care cancer centre.

Results: The study will be completed by December 2017, and final results will be published at the time of the conference. Till date, 120 patient records were analyzed-59 women and 61 men with a mean age of 53 years, 21.7% were from Bihar, and 52.5% had ECOG 2. Cancer of gall bladder was present in 73.3%, hepatocellular carcinoma-13.3%, Cholangiocarcinoma-5%. The 3 commonest symptoms on presentation are pain, anorexia, and tiredness [ESAS scores - 16.7 % had pain (4/10), Tiredness (2/10) - 18.3%, L.O. Appetite - (4/10)-14.2%].

Conclusion: Preliminary results suggests that the most common symptoms present in patients with advanced HBC referred to palliative care were pain, fatigue, and anorexia; constituting a well-known symptom cluster.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 87: SYMPTOM PROFILE IN PATIENTS OF ADVANCED ESOPHAGEAL CANCER RECEIVING PALLIATIVE CARE IN A TERTIARY CANCER CENTRE

Rutula Sonawane 1, Deodhar JK 1, Ghoshal A 1, Anuja Damani 1, Salins NS 1, Muckaden MA 1

Introduction: Esophageal cancer is one the most common cancers in India. Oesophageal cancer (EC) is often diagnosed at an advanced stage, leading to poor clinical outcomes and impact on Quality of life. This study was a retrospective audit of symptom profile of advanced oesophageal cancer referred to palliative care clinic.

Objectives: To evaluate the symptom profile in patients with advanced esophageal carcinoma using Edmonton Symptom Assessment Scale.

Methods: Study design: observational retrospective review of charts filled routinely for preliminary assessment of patients’ between 1/11/2016 to 31/10/2017.

Inclusion criteria:

  1. Patients with ca esophagus presenting in outpatient Palliative Medicine Department

  2. Above the age of 18 yrs.

  3. Eastern Cooperative Oncology Group (ECOG) 1 to 4.

Exclusion criteria: Patients with gastro esophageal junction cancer.

Results: The study is estimated to be completed by December 2017. The results will be published at the time of the conference. Till date, of 61 patient records analyzed-15 (24.6%) were women and 46 (75.4%) men with a mean age of 50 years, and 31 (50.8%) had ECOG 2. The commonest symptoms on presentation are pain, nausea, breathlessness, and dysphagia, [12 (19.7 %) pain (Mean Score on ESAS-4/10), 7 (11.5%) had Nausea, 6 (9.8%) had Breathlessness, 32 (52.4%) had Dysphagia].

Conclusion: Preliminary results suggests that the most common symptoms present in patients with advanced Carcinoma Esophagus referred to palliative care are pain, nausea, dysphagia and breathlessness.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 88: PALCARE: MAKING EVERY DAY COUNT

Pheroza Bilimoria 1

Introduction: Even in a mega-metropolis like Mumbai, palliative care services remain scarce and little known. A young NGO is changing that through the impact of its home-based, palliative care for end-of-life patients, with mainly incurable/advanced cancer.

Objectives: To showcase PALCARE's evolution since its launch in December 2015 so as to encourage others to emerge and thereby help fill the huge lacuna in palliative care services across India.

Methods:

  1. The care is delivered in the patient's home enabling them to be comfortable and pain-free, surrounded by loved ones, till the very end

  2. Multidisciplinary teams comprising of doctor, nurse and psychologist, specially trained with skills in palliative care, ensure a holistic service

  3. The teams undergo intense training and constantly attend CEPs to be knowledgeable and proficient

  4. Committees, comprising of eminent palliative care specialists, provide their expertise to ensure good standards of care and develop locally relevant guidelines

  5. Networking with Onco-specialists/hospitals, including Tata memorial Hospital, provide referrals

  6. A distinguished Board of Trustees lends credibility, essential for a start-up.

Results: PALCARE has enrolled 350 patients in 24 months, 273 have passed on, of which 80% of deaths were peacefully at home, 10% in hospitals and 10% in a hospice. In addition, the hugely positive patient/family satisfaction is evident in the growing number of patient referrals.

Conclusion: Good quality, home-based palliative care services can be successful even in large cities. They need to flourish rapidly to meet the huge requirement for palliative care services in India.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 89: QUALITY OF LIFE IN A SPECTRUM OF ADVANCED CANCERS ASSESSED WITH PALLIATIVE OUTCOME SCALE

Astha Koolwal Kapoor 1, Seema Mishra 1, Sushma Bhatnagar 1

Introduction: Advanced cancer patients frequently have poor quality of life due to multitude of factors. Standardized assessment of patient's symptoms and quality of life (QOL) with advanced cancer is crucial for establishing follow-up care. Palliative Outcome Score-Staff (POS-Staff) questionnaire[1] is a11 question - 40 point Likert scale which has shown increased adoption internationally.[2]

Objective: To assess QOL in inpatients admitted with different advanced cancers.

Methods: After obtaining informed consent, PCU inpatients >18 yrs and without cognitive decline were subjected tothe POS-Staff questionnaire by a single resident physician. Socio-demographic andtreatment-relateddata and Eastern cooperative oncology group (ECOG) scores were obtained. Anonymizeddata wasstatisticallyanalysed using SPSS v.21.

Results: 100 patients out of total 158 PCU inpatients with mean age 57.6 + 10 yrs. (54 % females) met inclusion criteria and were willing to participate. 55% were ambulatory (ECOG <2) and 45% had limited self-care (ECOG 3). Mean POS score was 25 + 2. The items with maximum mean scores were pain (3.1), time spenton appointments/poor addressal of practical care issues (2.8) and care-givers anxiety (2.8). POS scores between different cancers, stages and ECOG scores were not significantly different (P = 0.87; 0.64; 0.77).

Conclusion: Standardised QOL assessment is simple and should be performed at each follow-up visit. This study highlights that it is crucial to not only address symptoms such as pain, but also to address practical care-related issues which can affect the QOL significantly.

REFERENCES

  1. Hearn J, Higginson IJ. Development and validation of a core outcome measure for palliative care: The Palliative Care Outcome Scale. Palliative Care Core Audit Project Advisory Group. Qual Health Care 1999;8:219-27.

  2. Rugno FC, Carlo MM. The Palliative Outcome Scale (POS) applied to clinical practice and research: An integrative review. Rev Lat Am Enfermagem 2016;24:e2764.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 90: ASSESSMENT OF QUALITY OF LIFE IN HEAD AND NECK CANCER PATIENTS VISITING PALLIATIVE CARE OUTPATIENT DEPARTMENT

Abhity Gulia 1, Nishkarsh Gupta 1, Rakesh Garg 1, Vinod Kumar 1, Sachidanand Jee Bharti 1, Seema Mishra 1, Sushma Bhatnagar 1

Context: Head and neck cancers constitute a third of the cancer burden in India. Patients with Head and neck cancers may have one or more specific symptoms like functional symptoms associated with eating, speaking and breathing caused by the anatomical location of the tumor (e.g. dysphagia and dyspnea), toxicity due to previous treatment (e.g. aphonia and xerostomia), problems due to medical devices (e.g. feeding tube and tracheostomy cannula), and symptoms caused by a fungating tumor (e.g. cosmetic change, malodor and bleeding). These symptoms substantially may reduce physical functioning and quality of life (QOL).

Aims: To study the QOL in patients diagnosed with head and neck cancer visiting palliative care OPD at a tertiary care oncology setup.

Methods: This is a prospective observational study done in adult patients with head and neck cancers. A questionnaire to assess the QOL using the EORTC - QOL30 and EORTC H and N 35 was used. Patients with cognitive impairment at baseline were excluded.

Results: Majority of the study participants were males indicating higher incidence of the disease among males due to increased prevalence of tobacco related habits. In our study, majority of patients presented with T4 stage with fatigue and pain due to lack of awareness about oral cancer among general public. The patients with higher symptom score had poor functional and global health status which led to overall poor QOL.

Conclusion: Assessment of QOL in patients with head and neck cancer is important. We need to integrate quality of life assessment with the clinical management of the patients.

Keywords: EORTC - quality of life 30; head and neck cancer; quality of life

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 91: COMMUNITY READINESS TO SUPPORT PALLIATIVE CARE SERVICES: AN EXPLORATION IN RAICHUR

Divya Sarma 1, Sanghamitra Iyengar 1, Sulekha K 1, Hanumesh Gunnal 1, Arun Bhandari 1, Paramesh Gorkal 1, Basavraj Kanti 1, Iramma 1

Background: With Karnataka rolling out Palliative care policies and improving service availability, it is important to strengthen access to services. Communities can be a crucial first line of support and linkage to appropriate palliative care services.

Objectives: The objective of this study was to understand the needs of people living with life-limiting illness in rural communities and their carers, and to understand the ways in which the communities are supporting or can potentially support them.

Methodology: 12 focus group discussions were held across five villages in Raichur district involving 176 participants. Interviews were conducted with 24 people living with chronic/life limiting illnesses in these villages and 25 carers.

Results: Communities have a good understanding of how the life limiting condition affects patients and their families including the physical and emotional distress as well as the economic vulnerability of the families due to the illness. Currently, individual community members are already a significant source of support for these people, particularly non-monetary support. Community members also expressed willingness to continuing supporting these families in more effective ways.

Conclusions: Communities’ capacity to support people with chronic illness and their families has already been demonstrated in Kerala. This study shows that such a model is also feasible in other geographical areas, with very different development context. Interventions which recognize and build on this can help create a strong first line of support and linkages for palliative care services which will strengthen then roll out of the policy.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 92: AWARENESS AND UNDERSTANDING ABOUT PALLIATIVE CARE IN PATIENTS VISITING PALLIATIVE CARE OUTPATIENT DEPARTMENT

Swati Bhan 1, Nishkarsh Gupta 1, Rakesh Garg 1, Vinod Kumar 1, Sachidanand Jee Bharati 1, Seema Mishra 1, Sushma Bhatnagar 1

Introduction: Palliative care (PC) is an approach that helps to improve the quality of life of patients (adults and children) and their families facing life-threatening illness. The awareness among the patients regarding palliative care is limited and even when they are referred they do not know about it. This audit was done to identify the understanding and perceptions of palliative carein patients visiting palliative care outpatient department (OPD) and identify strategies to enhance their awareness and understanding of PC.

Materials and Methods: Patients visiting palliative care OPD were asked to fill a questionnaire to assess their knowledge about PC and their overall experience.

Results: Majority of them were males and from Delhi and nearby areas, 20% of them were from distant places more than 300km. Majority of the patients had not heard the term PC before and were not aware about its meaning. Most of them (90%) were send to because their pain is too much be controlled by the oncologist. During their first visit the PC physicians clearly explained about the disease status, took care of their pain and other symptoms and discussed psychosocial issues.

Discussion: We think the major reason for the lack of awareness about PC services is limited availability across the country and lack of coordinated approach. An early introduction to PC improves the quality of life (QOL) and in patients with advanced cancer and PC should be integrated with the care plan along with curative treatments.

Conclusion: The main problem identified in the audit was the inadequateinformation and late referral of the patients to palliative care. So we should make a model where PC services are offered at moment of cancer diagnosis along with curative services throughout the illness. This will allow the PC physicians to discuss about the disease trajectory since beginning and make a good rapport with the patient.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 93: ORAL MORPHINE FOR REFRACTORY DYSPNEA IN PATIENTS WITH ADVANCED INTERSTITIAL LUNG DISEASE: A CASE SERIES

Rajam K Iyer 1, Rajan SK 1

Introduction: Interstitial lung disease (ILD) is a chronic progressive incurable disease with survival of 2-4 years from diagnosis. ILD Patients are symptomatic for a long duration, resulting in a poor quality of life. Palliative care expertise is markedly inaccessible to patients with ILD. There is growing evidence to suggest use of opioids in ILD with refractory dyspnoea and help relieve breathlessness and thus improve health-related quality of life.

Methods: Retrospective analysis of 17 ILD patients (median age 42 years; 9 females) attending an outpatient clinic of a private hospital, in Mumbai was done from January 2017 to September 2017. All were wheel chair bound, oxygen dependent and scored more than 8 on the visual analogue scale for breathlessness. All patients were counselled, informed consent was taken and they were prescribed low dose oral morphine. Initial dose of 2.5mg twice a day and titrated to 8 or 6 hourly as per response. The patients were reassessed by visual analogue scale after 6 weeks.

Results: All the patients recorded a score of more than 8 on the scale in the beginning. One patient refused morphine and was excluded. All 16 patients recorded a score of 4-5 after 6 weeks of oral morphine.

Conclusion: The findings emphasize the need for more evidence of safe role of opioids in refractory dyspnoea in advanced lung diseases like ILD. It is also important to develop strategies to effective integration of palliative care for ILD which will require multidisciplinary participation.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 94: REINCARNATION A PHENOMENON FOR THE EOLC

Poorvaali Sur 1

Introduction: I have followed Uttara up periodically, from 1993, met her earlier. Her case has been published By Dr Stevenson (Stevenson 1975). Who verified the facts. Uttara became Sharada, on the Astami day of the moon cycle. Born into a Maharashtrian family, and gave an account of Sharada, who was born into a Bengali Brahmin family more than 200 years ago. Sharada's family genealogy was traced in the journal Purnima, published by the Royal Family of Burdwan, where her father and uncle worked as priests 200 years ago. She exhibited xenoglossy. And used the Thakurbhasha, Bengali language, which is now obsolete.

Objective: There is evidence of reincarnation in the world, which can add a positive outlook To EOLC. An appeal to the community to include it in palliative medicine, especially borrow it for the care at the end of life.

Methods: A case of reincarnation, followed up by me independently over the years. And extensively researched by, Dr Stevenson, and evidence verified.

Results: Uttara's case proves beyond doubt that reincarnation cannot be denied as a phenomenon.

Conclusion: Propels extensive studies in the direction, to better understand it. To include it in EOLC, in the counselling's, which will add positivity to thoughts of dying and a new dimension to Western Medicine.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 95: DESCRIPTIVE STUDY – MODIFICATION OF PALLIATIVE NURSING CURRICULUM TO ENSURE ESSENTIAL COMPETENCIES AND ADEQUATE SELF-EFFICACY OF NEWLY RECRUITED NURSES WORKING AT PALLIATIVE SEVA KENDRAS IN RURAL DISTRICTS OF TELANGANA

Nandini Vallath 1, Gayatri Palat 1, Priya Kumari 1, Vineela Rapelli 1, Swarup Immaraju 1

Background: Palliative Seva Kendras [PSK] are being set up in 8 districts of Telangana, to make PC accessible to the needy patients nearer to their homes, through the public healthcare system.

The newly recruited PC nurses are fresh graduates without previous clinical work experience, andare required to work at PSKs independently immediately after training. They need to be trained not only in PC core competencies, but also in skills for administrative, stock-keeping, RMI related record keeping, home-care triaging as well as coordination for continuity of care across settings. Technological skills to access virtual mentorship are necessary. The Area hospital staffs as well as the served community are relatively unaware of the purpose and scope of PC. Hence advocacyis another major part of their job roles.

The current 6 weeks PC nursing modules are focused on clinical and communication skills.

Objectives: Modify the six weeks PC nursing curriculum to suit the learning objectives of nurses working at the PSK.

Methods:

  1. List the essential competenciescovered by the current curriculum

  2. Score baseline self-efficacy of the PSK nurses after 1 month of work

  3. Make field notes through on-site observation of roles of a PSK nurse, from the pilot venture

  4. Noteadditional competenciesthat are essentialfor a nurse working at a rural/semiurban PSK and list the gaps

  5. Translate them into learning objectives

  6. Modify the curriculum incorporating the new skills and objectives

  7. Utilise the new training modulesby applying the learning objectives, for the next batch of PSK nursing trainees

  8. Make field notes, administer self-efficacy scoringand list anyadditional competenciesat the next rural PSK and continue the cycle.

Results: Would be described by comparing (i) the score of 1 month self-efficacy of 1st trained team and (ii) score of 1 month self-efficacy of 2nd trained team (iii) summarize the gaps in essential competencies, between the conventionalcurriculum and the modified curriculum.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 96: COPING STRATEGIES FOR END OF LIFE AND BEREAVEMENT CARE

Mallika Narayan 1, Halima Aurangabadkar 1

Introduction: According to the World Health Organization (2017), cancer accounts for approximately 7.6 million deaths annually. In India, cancer is a major cause of mortality and is predicted to lead to over 8.8 lakh deaths by 2020 (Indian Centre of Medical Research, 2016). Therefore, there is a need to not only improve the quality of life of these patients but to also provide their families with the necessary support to deal with their grief in a healthy way.

Objectives:

  1. Recognize the stressors faced by dying patients and focus on improving their quality of life irrespective of their diagnosis

  2. Ensure that patients are allowed to die in a dignified and peaceful manner

  3. Provide patients families with psychosocial and/or spiritual support to deal with their grief.

Methods: Weekly counseling of patients and their caregivers is carried out at 11 local hospitals in Mumbai. Often patients and caregivers are counseled separately. They are both provided with reassurance and guidance on how to cope with their situation.

Results: We were able to address any concerns patients had and help improve their current quality of life. Additionally, with caregivers, in follow up sessions we found them to be coping relatively well with their grief.

Conclusion: Counseling has proven to be essential in alleviating the fears and stressors faced by patients and their families. It enables the affected individuals to grieve and to cope in a healthy manner.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 97: BENEFITS TO THE PATIENTS IN HOSPICE CENTER BY COLLABORATING OTHER SERVICES

Logeshwari D 1, Bharathi B 1

Introduction: RMD Pain and Palliative Care have many different care centers in Tamil Nadu. The majority of these care centers provide basic needs, supply medical care, and offer emotional/spiritual assistance to terminally ill patients. In addition to these patients who have suffered tremendous pain due to various medical reasons, Dr. Republica Sridhar also treats outpatients, old age patients, and offers home treatments as well.

Objective:

  • Primary: To determine effective ways of engaging terminally ill patients, while benefitting their health

  • Secondary: To see how people other than the patients, such as nurses, social workers, and other staff members, can benefit from the advantages of such entertainment.

Methodology: My Experience of two weeks at RMD Pain and Palliative Care Trust in T. Nagar and have gotten to know the patients and practices of this center very well. In addition, I have experience from multiple hospitals and a hospice care center in the United States.

Conclusion: After spending two weeks in RMD's main center in T. Nagar, with 14 terminally ill and elderly patients, my distinct observations were that I realized that human interactions go a long way with these patients. However, a struggle many doctors and nurses face with these patients is a way to keep them engaged and their mind active. Here are a few methods that could work with many patients.

  • Adding value to their quality of life

  • Although not all patients are willing to be entertained by another person, there are many that enjoy the presence of others and want to witness their talents. Engaging patients with singing, dancing, comedy shows, and even instrumental performances is a great way to bring some life into the care center

  • Few suggestions religion is a concept that resonates deep inside almost every patient at RMD and other hospitals and care centers in India. Having seen hospitals and hospices in both the United States and India, I can confidently say that Spiritual thoughts, videos, group prayers, and more will offer great benefits to the patients, as well as the surrounding RMD community

  • In addition to these helping the patients, this can also give the nurses and other caretakers, such as social workers and lab workers, a mental stress relief.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 98: EXPLORING THE PERSPECTIVES OF BEREAVED FAMILY MEMBERS ABOUT HOSPITAL BASED BEREAVEMENT SUPPORT IN A TERTIARY CANCER CENTRE

Amelia Sahana Michael 1, Raghavendra Ramanjulu 1, Brother Lohith 1, Michelle Norman 1, Rajeshwari A 1, Nurse Geeta 1, Esther Sathiaraj 1

Introduction: The scope of palliative care extends from diagnosis to bereavement. As Palliative professionals called to provide support for the bereaved family, it is imperative to understand and identify their specific unmet needs, in order to initiate a support service accessible to all, yet individualised. The comprehensive oncology team at our tertiary cancer hospital, practices a patient centred approach where the patient is an active participant of their care. Bereavement support – an integral part of this care – is yet to be established. With a paucity of protocols and guidelines in the Indian setting in this regard, we conducted this study, exploring the perspectives of bereaved family members about hospital based bereavement support. Equipped with this knowledge, we hope to initiate the development of an individual focused, accessible bereavement support service, which would influence practice changes and policy making.

Objectives: To explore hospital based bereavement support in a tertiary care cancer centre, from the perspectives of bereaved family members.

Methods: In depth interviews of family members, over the age of 18, using a semi-structured interview guide. Thematic analysis of the data, to explore the phenomenon of hospital based bereavement support.

Results: More than half the participants expressed a positive response to having a bereavement support service and supported open discussion during end of life care talks.

Conclusions: Bereavement support is perceived as a needed service in the Indian context. Ways in which this hospital bereavement support is perceived to be provided is varied and requires further studies.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 99: TO STUDY THE AWARENESS AND ATTITUDES TOWARDS END OF LIFE CARE IN PRIMARY CAREGIVERS OF PATIENTS WITH ADVANCED CANCER

Sourav Burman 1, Rakesh Garg 1, Sushma Bhatnagar 1, Seema Mishra 1, Vinod Kumar 1, Sachidanand J Bharti 1, Nishkarsh Gupta 1

Introduction: Daily day to day care of end stage cancer patients is not a mere burden on the patients but an agonizing experience for the caregivers also. The concept of palliative care is not just restricted to wellbeing of the patients but also appropriate psychological counselling of the caregivers. The concept of limiting and withholding life support interventions when the outcome is decided is called medical futility and it needs to be recognized. The spectrum of end of life care will comprise the mitigation of suffering of the patient and his family members alike. The end of life care even includes certain important perspectives like “terminal care” and “bereavement support”. Few studies have aimed to address the concern of adequate assessment of the attitude and awareness of primary caregivers regarding end of life care. In this study we have aimed to study the awareness and attitudes of primary caregivers of terminal stage cancer patients in a tertiary hospital.

Materials and Methods: This cross-sectional study was done among primary care givers of patients with advanced cancer receiving palliative care at DR BRAIRCH, AIIMS, New Delhi after approval from institutional ethical committee. The study included a four sectioned questionarre which the primary caregiver has to answer in the presence of the principal investigator. The primary care giver were explained about the study protocol in his own language and written informed consent was taken. All patients who have been denied curative chemotherapy and radiotherapy were included in the study. As it is a cross sectional population survey a formal sample size calculation has not been calculated but we interviewed seventy primary caregivers over a period of one year.

Results: 77% caregivers said they were unaware of the term palliative care. 47% people said that palliative care should begin at the time of diagnosis and 44% agreed that palliative care should be given during course of treatment. There was no significant difference of opinion among females or males. 76% of people in lower income group did not understand end of life care whereas only 33% patients in high income group understood palliative care. 62% patients who didn’t have any knowledge about palliative care wanted to forego ICU support in terminal patients.

Discussion: There is no significant difference between male and female populations in awareness of palliative care. Mostly healthcare associated people are having some knowledge about palliative care. The people who don’t understand end of life care are more willing to initiate palliative care and people who are planning to initiate palliative care are more eager to opt for ICU based resuscitation efforts, probably hints at the loss of basic understanding of the concept of palliative care.

Conclusion: This interim data shows palliative care is still at the grass root level and tremendous effort in terms of mass education program and counselling will be needed to spread the essence of holistic palliative care including the futility to pursue aggressive care in such terminal patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 100: DOES RESPITE MODEL OF PALLIATIVE CARE FACILITATE DISCUSSION AND ACHIEVEMENT OF PREFERRED PLACE OF DEATH: A BASELINE AUDIT

Tanvi Shinde 1, Seema Rao 1, Jayeeta Chowdhury 1, Anuja Damani 1, Arunanghsu Goshal 1, Jayita Deodhar 1, Mary Ann Muckaden 1, Naveen Salins 1

Introduction: Documenting preferences and achieving congruence between the preferred and actual place of death is a quality indicator of palliative care services. The available literature shows incongruence between the preferred place of death (PPD) and actual place of death (APD). Respite Model of Palliative Care is an out of hospital specialist palliative care unit catering to patients with advanced cancer attending Tata Memorial Centre. It provides brief admission for symptom control, psychosocial support, empowerment of caregivers in medical and nursing care, and maintenance of continuity of care.

Objective: To evaluate whether respite model of palliative care facilitates discussion and achievement of PPD by estimating APD and determination of congruence between PPD and APD.

Methods: Medical records of all patients admitted to the respite palliative care facility of the Tata Memorial Centre, Mumbai between April 1, 2017 to September 30, 2017 were analysed to assess whether PPD was discussed and documented, and whether the patients died at their preferred place of choice. Preferences were documented as descriptive data and the proportions were estimated. Congruence of PPD and APD was estimated using Wilcoxon Signed Rank test.

Results: 220 patients were admitted to the respite palliative care centre during the study period. PPD was discussed and documented in 199 patients (90.5%). 80% of the patients or their caregivers preferred home as the PPD. Among the 183 patients who died during the study period, 164 (90%) had discussion and documentation of the PPD. In the rest 10% discussion of PPD did not take place due to short stay at respite palliative care centre. Among the 164 patients where PPD was discussed, 112 (68.2%) died at their preferred place of death. Estimation of congruence between PPD and APD using Wilcoxon Signed Rank test showed that difference between PPD and APD was significant (P < 0.01).

Conclusion: Two thirds of patients receiving respite palliative care died at the preferred place of death. However, congruence between the preferred and actual place of death was not statistically significant.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 101: ASSESSMENT OF KNOWLEDGE AND AWARENESS OF END-OF-LIFE CARE AMONG DOCTORS WORKING IN INTENSIVE CARE UNITS

Kritika Agrawal 1, Rakesh Garg 1, Sushma Bhatnagar 1, Seema Mishra 1, Nishkarsh Gupta 1, Sachidanand Jee Bharti 1, Vinod Kumar 1

Introduction: End-of-life care (EOLC) is an increasingly important concern in the management of terminally-ill patients. Effective EOLC depends significantly on the physicians working in the intensive care setups. Thus adequate knowledge of healthcare professionals regarding EOLC is important. Despite the guidelines by Indian Society of Critical Care Medicine,[1] clinical application of EOLC in the terminally-ill in Indian ICUs remains deficient and Indian data with respect to EOLC in healthcare professionals is scarce.[2]

Objectives:

  1. To evaluate the awareness and knowledge of doctors working in ICU towards EOLC.

Methods: Postgraduate students, senior residents, and consultants with at least 3 completed months of dedicated adult ICU rotation in past 3 years were invited to participate. A paper-based questionnaire was distributed and their responses were collected anonymously. The questionnaire was based on existing literature on EOLC and our personal experience in palliative care. The questionnaire comprised of 4 sections: demographic details, experience with EOLC situations, general awareness of EOLC, and specific awareness of EOLC in clinical practice. The collected data was analysed by descriptive analysis.

Results: The respondents ranged between the age group of 24-39 years and had ICU experience of 3 months to 9 years (mean = 14 months). Majority of the respondents were from the field of Anaesthesiology. Most respondents had not counselled more than 5 families regarding EOLC during the last one month. Almost all of the anaesthetists and 76% respondents from other fields had heard of EOLC; the major source of information being their work in their concerned speciality. However, only about one-third of the respondents apply EOLC principles in their clinic practice. The main barriers for this were lack of information and lack of training. Though nearly one-fourth anaesthetists were aware of Indian guidelines about EOLC, but none of the other specialists are aware of them. Majority of respondents tended to disagree or strongly disagree regarding usage of ICU and resuscitation of terminally ill patient and were in favour of home care for terminally ill patients. But, almost one-third respondents felt somewhat uncomfortable in discussing EOLC issues with the families. And almost half of the respondents felt that they were only somewhat competent in managing EOLC issues.

Most respondents opined that training and education in medical curriculum for terminally ill patients is ‘Somewhat’ or nil and were in strong favour of inclusion of specific training for the same in the medical curriculum.

Conclusion: There is a gross lack of knowledge of various concepts of EOLC in doctors working in ICU highlighting the importance of a proper structured EOLC teaching programme as part of the medical curriculum.

REFERENCES

  1. Mani RK, Amin P, Chawla R, Divatia JV, Kapadia F, Khilnani P, et al. Guidelines for end-of-life and palliative care in Indian Intensive Care Units’ ISCCM Consensus Ethical Position Statement. Indian J Crit Care Med 2012;16:166-81.

  2. Chen E, McCann JJ, Lateef OB. Attitudes toward and experiences in end-of-life care education in the Intensive Care Unit: A survey of resident physicians. Am J Hosp Palliat Care 2015;32:738-44.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 102: PREPAREDNESS AND CARE BURDEN IN FAMILY CAREGIVERS OF PERSONS WITH TRAUMATIC SPINAL CORD INJURY

Midhun Manohar 1, Ngaitlang Mary Tairang 1

Spinal cord injury is debilitating in nature that affects not only the physical, spiritual, mental, financial status, relationship with others but also the overall functioning of the individuals. Caregivers require comprehensive medical and therapeutic management of persons with Traumatic Spinal Cord Injury (TSCI). Thus, the role of caregiver starts soon after the accident which continues throughout even after treatment. The unexpected nature of TSCI that leaves no space for family members to face the reality of caregiving, this unprepared role may lead them to experience stressful life. Spinal Cord Injury being a debilitating and disabling in nature which may act as a hindrance to function day to day life independently. Oftentimes family members, such as spouse or parents have to take the role of caregiving. This study is a descriptive research in which Preparedness for Caregiving Scale and Modified Caregiver Strain Index were used as the tools to find the relationship between preparedness for caregiving and experience of burden among family caregivers of persons with TSCI. Results revealed that of the total participants, majority (73%) were female caregivers of persons with TSCI. Also, it was found that mean rank in preparedness of caregiving by females was significantly higher than males. Though there was no statistically significant difference between gender in Modified Caregiving Strain Index total score but the mean rank score was found to be higher among males when compared to their counterparts. In conclusion, evidence from the current study indicating how important to be prepared by family caregivers in lessening the burden and strain in caregiving.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 103: COPING STRATEGIES IN END OF LIFE CARE

Sarada Lingaraju 1, Anjaneyulu 1

Introduction: Coping strategies for self-sustenance in a hospice facility by understanding one's own reaction and perception of death.

Objectives: Working with dying patients on a regular basis can be a very draining experience. Most of the time the nursing staff, counsellors or the social workers experience the psychosocial or spiritual issues affecting the patients. This team must also face questions about their mortality while effectively working with the patients and their families. This constant confrontation with mortality not only helps in their spiritual growth but also in getting a healthier perspective of life. But the downside of this situation is that they tend to experience mental fatigue to the extent that it can affect their performance and can also cause burnout. Especially young individuals who are in the very beginning of their career tend to experience heightened death anxiety. Especially female workers experience death anxiety more than their male counterparts because of their willingness to express emotions. Another fact is that these workers experiencing strong emotions find it difficult to maintain a professional boundary. So the self-care of nursing staff, counsellors and social workers is very essential in preventing or reducing compassion fatigue and to maintain work standards.

Methods: The stages of grief that hospice nursing staff, counsellor and social worker progress through in their ability to handle the emotions associated with working with dying:

  1. Stages of intellectualization

  2. Emotional survival and depression

  3. Emotional arrival and compassion

  4. Preparing for self care

  5. Addresses one's own cultural and religious beliefs and how they might influence their work

  6. Includes personal work on death anxiety and denial for improving their professional work

  7. Includes becoming aware of difference between themselves and their patients

  8. Addresses one's ability in understanding the preference of the patient for the hospice care and honouring it

  9. Is to develop a high sense of accomplishment for helping to ease the suffering of dying clients and their families

  10. Continued education programs

  11. Spiritual approaches.

Results: The social workers, counsellors or the nursing staff with a low level of death anxiety, can be comfortable working with dying patients, and had a high level of accomplishments, a strong sense of gratification and compassion satisfaction.

Conclusion: Personal preparation and self-care are vital in maintaining well-being and quality of practice for the sake of patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 104: DOES HOME-BASED PALLIATIVE CARE FACILITATE HOME-BASED DEATH? A RETROSPECTIVE AUDIT OF PALLIATIVE HOMECARE DATABASE

Girkar K 1, Dhiliwal S 1, Ghoshal A 1, Deodhar JK 1, Damani A 1, Muckaden MA 1, Salins NS 1

Introduction: Studies have shown that home based palliative care iseffective in improving physical symptoms, psychosocial issues and quality of life in patients with advanced life limiting illness at both urban and rural setting. An Indian study conducted at Pune showed that 83% of the Indians prefer to die at home. Home based death is commonly viewed as a dignified and comfortable experience than hospital death.

Objective: To know whether home based palliative care facilitate home based death.

Methods: Medical records of 907dead patients, with a documented place of death, registered under palliative home care services of the Tata Memorial Centre, Mumbai, between January 1, 2014 to September 30, 2017 and receiving home based palliative care, funded by Empathy Foundation were audited. The place of death was categorised as home, hospital and hospice. Place of death was documented as a descriptive data and the proportions were estimated. The outcome of home based palliative care on the place of death i.e. a. home versus non-home and b. home and hospice versus hospital for the overall years and individual yearswas estimated using McNemar's test. The place of death for between the years was estimated using Chi Square test.

Results: Among the 907 deaths, 610 (67.25%) died at home, 165 (18.20 %) died at hospital and 132 (14.55%) died at hospice. 297 (32.75%) patients who were at home during the first home visit died outside their homes. Comparison of home (67.25%) versus non-home deaths (32.75%) for the overall years and individual years using McNemar's test was significant (P < 0.01). This suggests that home palliative care intervention did not translate into statistically significant home deaths. Comparison of home and hospice together (81.8%) versus hospital (18.2%) for the overall years and individual years using McNemar's test was significant (P < 0.01). This suggests that home palliative care intervention did not translate into statistically significant home and hospice deaths when estimated together. Comparison of place of death between the years using Chi Square test was significant (P = 0.02). [Table 1].

Table 1.

Comparison of place of death

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Conclusion: Home based palliative care facilitated home based deaths in two-thirds of patients. However, the impact of home based palliative care on home based death was not statistically significant.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 105: EXPERIENCES OF NURSES WHILE CARING FOR PATIENTS ON END OF LIFE CARE IN THE TERTIARY CANCER CENTER IN SOUTH INDIA

Lohithasva SO 1, Raghavendra Ramanjulu 1, Amelia Michael 1, Nurse Geeta 1

Introduction: Nurses are the key bedside professional care-givers son the Oncology ward in a tertiary care hospital. Nurses are required to care for patients undergoing curative treatment and patients on end of life care (EOLC). Caring for EOLC patients can be very demanding physically and emotionally. Quality care during EOLC critically depends on the overall experiences and acceptance of EOLC by nurses.

EOLC has become the focus of most health care organizations as patients with life limiting illnesses are living longer. Nurses working with patients this setting encounter death, sorrow and emotional situations in their everyday routine practice. Clear understanding of the experiences of ward staff are essential to explore the interventions that would prevent burn out and improve resilience and commitment. There is paucity of literature exploring the gap in knowledge and burden on this topic in the Indian context.

Objectives: To explore the ward nurses’ experiences of caring for patients on end of life care in a tertiary cancer centre.

Methods: 40 ward nurses from all levels of nursing care identified as participants in the study. An anonymised questionnaire drafted using guided examples, with both quantitative and qualitative open-ended questions. Duly filled questionnaires collected, data compiled and themes identified.

Results: The major themes that emerged were inadequate experience, lack of education, fear of questions from relatives and frustration at not being able to voice concerns.

Conclusions: Regular debriefing with staff on ward and education will improve the acceptance, commitment and hence quality of care provided at end of life.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 106: TERMINAL ILLNESS AND END OF LIFE CARE: THE IMPACT OF THE BIOPSYCHOSOCIAL-SPIRITUAL MODEL IN INDIAN PATIENTS

Shiv Pratap Singh Rana 1, Sangeeta Singh 1, Avinash Bundiwal 1

Introduction: Patients with cancer or life limiting illness entering in last phase of illness need expertise and multidisciplinary care. A combination of a rapidly changing clinical situation and huge psychosocial and spiritual demands present a big challenge that can only be met with competence, commitment and human compassion. Recognizing the terminal illness and last few hours of life along with compassionate Biopsychosocial care helps to keep alive the hope and improves quality of life of these patients.

Aim of the Study: We applied the Biopsychosocial-spiritual model of care in the treatment of 30 cancer patients at the last few days of terminal illness. The aim was to detect the depression among patients and relatives, functional restoration after providing care, hope survival and pain relief.

Results: Will be discussed in the conference.

Conclusion: A more comprehensive model of managing end of life care issues is needed that is mechanism-based and multimodal, using combination therapies including multidisciplinary treatment where appropriate, tailored to the needs of an individual, with the aim to optimize pain relief with minimization of adverse effects.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 107: AN ANALYSIS OF PATIENTS ENTERED INTO AN “END OF LIFE CARE PLAN” AND ITS IMPACT ON THEIR CARE

Jeremy R Johnson 1, Lipika Patra 1, Babita Varkey 1, Nagesh Simha 1, Maria Sonia Louis 1

Introduction: As part of “Project India” and also an Independent member of the International Collaborative for Best Care of the Dying Person (ICBCDP), Karunashraya, a 75-bedded Hospice in Bangalore, was tasked with designing a Care Plan suitable for patients requiring EOLC in India. This was based on the Ten Principles of the ICBCDP.

Objective: This study presents a breakdown of the types of patients looked after using the Care Plan and examines the impact on them and their families.

Method:

  1. A demographic analysis by tumour type, sex and age

  2. Length of time on the Care plan

  3. Feed-back (semi-structured questionnaire's) from patients, relatives and Clinical staff.

Results: All patients were in-patients and had diagnosed terminal-stage cancers.

  • Period covered: May 2016 to November 2017

  • Number of patients: 450 (142 Male, 308 female); average age 64

  • Commonest cancers

  • Males: Head and Neck, Gastro-intestinal, Lung

  • Females: Gynaecological, Breast, Head and Neck

Outcomes: With increasing experience, patients were placed on the Care Plan earlier and not just in

  • The last few hours prior to death

  • Clearer focus and goals

  • Better rapport with patients and relatives

  • Increased confidence in discussing the impending changes towards the end of life

  • Better information available for relatives

  • Increased satisfaction from relatives.

Conclusion: Considerable experience gained by the team, leading to improved care, confidence and support for patients and relatives.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 108: PATTERN OF PRESENTATION OF BREAST CANCER RELATED LYMPHEDEMA AND ITS IMPACT ON QUALITY OF LIFE OF BREAST CANCER PATIENTS ATTENDING PAIN AND PALLIATIVE CARE CLINIC

Aditi Suri 1, Sushma Bhatnagar 1, Seema Mishra 1, Deo SVS 1, Ajay Gogia 1, Shveta Seth 1

Introduction: With the advancement in treatment modalities available and improved survival rate, women receiving treatment for breast cancer are faced with a lifelong risk of developing lymphedema in the arm, hand, shoulder, breast, or chest wall which may result in physical impairment by limiting the range of motion, heaviness, and pain, causing inability to perform daily activities. There is a psychological impact in the form of decreased self confidence, negative body image, poor emotional well being resulting in social isolation causing deterioration of the quality of life (QOL). The present study was aimed to assess the pattern of presentation of BCRL in breast cancer patients attending palliative care clinic and to identify its influence on the quality of life of these patients.

Objectives: Primary objective was to study the pattern of presentation of Breast cancer related lymphedema. The other objective was to assess the effect of breast cancer related lymphedema on quality of life which was assessed using quality of life questionnaires.

Methods: After obtaining institutional ethical clearance, patients with history of treatment for breast cancer with lymphedema of upper extremity, reporting to outpatient department (OPD) of Onco-Anaesthesia and Palliative Medicine were enrolled in this study. Patients with history of surgery more than one year ago and history of treatment for breast cancer (surgery, radiotherapy) with lymphedema of upper extremity, reporting to pain and palliative care clinic were included in the study. Health-related quality of life was assessed using the EORTC QLQ-C30 version 3.0 and the breast module: EORTC QLQ-BR23 after obtaining EORTC permission to use the questionnaires for research purposes.

Results: The number of patients observed to have lymphedema were 22 while those without, were 28. Maximum patients were observed to have moderate lymphedema (n = 14; 63%), six patients had mild and two patients had severe lymphedema. Those with lymphedema, scored low mean values on functional scales of EORTC QLQ-C30, especially physical functioning (0.55 vs 0.65, p < 0.05), and social functioning (0.49 vs 0.52 p < 0.05). Patients with lymphedema scored higher on symptom scales such as fatigue, pain, constipation and financial problems. As regards EORTC QLQ-BR23 data, patients with lymphedema scores higher in breast and arm symptoms.

Conclusion: We can thus conclude that breast cancer related lymphedema caused a poorer quality of life in patients treated for breast cancer.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 109: THE EFFECTIVENESS OF DOCTOR-PATIENT COMMUNICATION FOR THE SYMPTOM RELIEF IN CHRONIC PAIN PATIENTS IN A TERTIARY CARE HOSPITAL: A PILOT STUDY

Anthony T 1

Introduction: Chronic pain is a common presenting symptom to physicians and it degrades the QoL, and psycho-social functioning of the patients. Even with advanced therapy the adequate pain reduction achieved in fewer than half of the treated patients. Inadequate knowledge and awareness on chronic pain and its therapy causes ineffective therapy among chronic pain patients. Enhanced doctor-patient communication seems to have positive influence on patient's behaviour towards their disease and treatment.

Objectives: To determine the extent of doctor-patient communication during the management of chronic pain patients and its effectiveness in symptom relief in this patient population.

Methods: This pilot study for cross-sectional survey is carried out among the patients who attended the rheumatology out-patient clinic in a teaching hospital under Ministry of Health, Sudan, above the age of 18 years of both gender. The data collected from the patients who attended clinic after obtaining informed consent, using structured questionnaire and CAT. The obtained data is analysed using Excel and Statistical Package for Social Sciences (SPSS) version23.

Result: The general characteristics of the participants are mentioned in Table 1. A total of eighteen patients (77.8% females), attending rheumatology clinic, participated in this pilot study. The ANOVA regression analysis for the correlation between CAT score and VAS gives p-value of 0.59.

Conclusion: This pilot study shows no significant relation between extend of physician-patient communication and therapeutic effect. However, it needs more number of patient participants for the final conclusion.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 110: HOMOEOPATHIC INTERVENTIONS IN PALLIATIVE CARE

Kavish Pandey 1, Piyush Gupta 1

Aim: Demonstrating efficacy of Homeopathic Medicines in Palliative Care.

Methods: Homoeopathic Dispensary was set up by Cancer Aid Society in 2015 and free homoeopathic camps are organized in Urban/Rural distributing free medicines treating pain due to migraine, arthritis, spondylosis, osteoporosis, gout, gastritis etc. by using homoeopathic medicines where pain reduced by 50% within a week improving the quality of life. Other symptoms like vertigo, swelling of joints, flatulence, nausea, vomiting, acidity, loss of appetite, indigestion, diarrhea, constipation, restlessness, sleeplessness, breathing problems and anxiety also decreased remarkably.

In homoeopathy the physician gives sufficient time to the patient in taking the history, which includes life style, diet, mental symptoms along with physical symptoms, which helps in creating the trust with the patient.

Result: Homoeopathy is based on symptomatology and not on the disease and they have no side-effects even if taken for long duration, often there are wonderful remedies which manages even complex cases. Pain management with homoeopathy gave good results improving quality of life.

Conclusion: If properly selected homoeopathic medicines prove to be effective, low cost and free from side effects hence an important option in palliative treatment.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 111: A PILOT STUDY TO DETERMINE EFFICACY OF ALOE VERA JUICE FOR PROPHYLAXIS AGAINST OPIOID INDUCED CONSTIPATION

Mohd Yunus Khilji 1, Shahnaz Chandad Rajkumar Nirban 1

Introduction: Opioid induced constipation (OIC) is the most common side effect of opioids and tolerance is rare hence prophylaxis is needed. Aloe possesses many properties which are beneficial for cancer patients. The plant leaves contains numerous nutrients and bioactive compounds with emollient, purgative, antimicrobial, anti inflammatory, antioxidant, antifungal, antiseptic properties.

Objectives: To determine efficacy of aloe vera juice for prophylaxis against opioid induced constipation.

Methods: Twenty cancer patients were divided in two groups of 10 each (group ‘S’ two tablets of senna 11.5 mg, group ‘A’ 20 ml of Aloe vera juice, twice daily). Bowel Function Index (BFI), need of additional therapy in form of tab bisacodyl and/or peripheral mu receptor antagonist, side effects and complications were noted on weekly basis for six weeks.

Results: Mean Bowel Function Index (BFI) was the primary end point and there was no statistical significant difference (p value > 0.05) [Table 1]. Additional therapy was needed in 12% patients in group S and in 19.5% patients in group A.

Table 1.

Bowel function index at various time intervals

graphic file with name IJPC-24-228-g012.jpg

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Conclusion: Aloe vera was effective in prevention of OIC in >80% patients with acceptable side effects. However, further detailed studies are needed to evaluate efficacy, safety and other beneficial effects of aloe vera in cancer patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 112: MULTI-DISCIPLINARY CARE: PSYCHO-PHARMACOLOGICAL APPROACH TO PAIN MANAGEMENT

Jayarajan Ponissery 1

Introduction: This paper is a reflective case study to highlight psycho-pharmacological interventions in patients receiving palliative care.

Objectives:

  1. To understand the impact of psychological issues on pain management

  2. Review of psychological/pharmacological approach in the management of pain in patients with psychological issues.

Method: Reflective study.

Case Discussion: Mr X is a 76-year-old man who was treated for metastatic (lung, bone and liver) rectal cancer, with lower anterior resection, colostomy with resection of liver metastasis (2011) followed by thoracotomy with pulmonary metastatectomy in 2015, and 8 cycles of chemotherapy. He was found to have carcinoma prostate in 2016, for which no curative options were considered. He had uncontrolled neuropathic pain on the left chest and was in denial regarding his prognosis. Being a pharmacist, he was aware and afraid of the side-effects of the medications; hence compliance was an issue and pain relief was unsatisfactory despite adequate doses of analgesics.

Results: Repeated visits by the psychologist/team were made to express continued interest in supporting the patient and journeying along his difficulties. Once the psychological issues were addressed and resolved, pain management was achieved, and the doses of the medications could be reduced considerably.

Conclusion: A psycho-pharmacological approach to care can relieve pain, refractory to pain medications, in a patient with psychological issues. This reflective study highlights the need for a systematic psychological/pharmacological approach which will improve pain management and result in meaningful outcomes for the patient, caregiver and health care providers.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 113: INTENSIVE DIETARY COUNSELLING IMPROVES THE QUALITY OF LIFE IN CANCER PATIENTS

Shalini Chakraborty 1, Esther Sathiaraj 1

Introduction and Objectives: The need for dietary counselling and nutritional support in cancer patients is generally accepted. However, evidence for the effectiveness is sparse. The aim of this study was to describe intensive dietary counselling, body weight and nutritional status during treatment, and investigate the effect of nutritional status with improved quality of life.

Methods: A total of 60 cancer patients under curative treatment were randomly assigned: group 1 (G1; n = 32), intensive dietary counseling with detailed diet plan (regular foods and/or nutritional supplements) and group 2 (G2; n = 28), ad libitum intake. Nutritional intake (diet history), status (Subjective Global Assessment), and QoL (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire) were evaluated at baseline and at the end of 1 month. End points were weight gain, nutritional status and overall Qol.

Results: At the end of 1 month, energy and protein intake increased in G1 and decreased in G2 (P < .01). Body weight and nutritional status significantly improved in G1 as compared to G2. In G1 all QoL function scores improved proportionally to adequate intake or nutritional status whereas in G2 all scores worsened (P < .05). In G1/G2, respectively, improvement/deterioration of QoL correlated with better or poorer intake or nutritional status (P < .05). Overall QoL was significantly better with improved nutritional status and BMI above average (P < 0.01).

Conclusions: During cancer treatment, dietary counseling was of higher benefit in improving the nutritional status, body weight and overall quality of life.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 114: BED SIDE ULTRASOUND: A BOON FOR SYMPTOM MANAGEMENT IN PALLIATIVE CARE

Priodarshi Roychoudhury 1, Sushma Bhatnagar 1

Introduction: Ultrasound has an important role in the management of several symptoms in Palliative Care. Major applications of bedside ultrasound include drainage of pleural effusion and ascites, nerve blocks, venous access, evaluation of urinary obstruction, and abscess drainage. Bedside ultrasound leads to better clinical decision-making as well as more accurate and faster invasive therapeutic procedures, under dynamic imaging. It also enhances patient comfort and reduces cost burden. However it's use is still not widespread in palliative care, owing to initial investment, lack of basic training and apprehension about its use.

Objective: This study is to analyse the utilization of bedside ultrasound in symptom management of patients in a palliative care ward of a tertiary referral centre of India.

Methods: We have retrospectively analysed the number of ultrasound guided procedures done for symptom relief over a period of 19 months from April 2016 to October 2017 in the palliative care ward of BRA IRCH, AIIMS New Delhi.

Results: Out of 1560 patients admitted in ward, 565 patients underwent interventions. Bedside ultrasound guided procedures were done in 387 patients with excellent symptomatic relief and almost no complication. It was also found to be more convenient and safe to perform procedures under dynamic imaging.

Conclusion: Ultrasound guided procedures are safer, more precise and effective in symptom management in Palliative care. There is an initial difficulty because of the learning curve and monetary investment but it can later prove to be an useful asset for any good Palliative setup.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 117: ASSESSMENT OF SYMPTOM BURDEN AND QUALITY OF LIFE IN ADVANCED GYNAECOLOGICAL MALIGNANCIES AT A REGIONAL CANCER CENTRE OF INDIA

Shruti Gairola 1, Seema Mishra 1

Introduction: Symptoms of any disease, both at diagnosis and throughout treatment, have a significant impact on patient distress, quality of life, and survival. Symptoms can be related to the disease itself, to the disease treatment, to concurrent co-morbidities, or to a combination of any or all of these. Symptoms consequent to therapy may lead to treatment delay or premature treatment termination, and post-treatment rehabilitation is often complicated by residual treatment-related symptoms. Patients with advanced cancer have multiple symptoms produced by disease and various combinations of treatments. In clinical practice, the number and severity of symptoms experienced by a patient may often be under assessed, leading to inefficient symptom management and poor quality of life.

Objectives:

  1. To study Symptom burden in Gynecologic cancer patients

  2. To study QOL parameters at primary visit, at 15 days and 1 month later to OPD/PCU/Emergency ward.

Method: Female patients coming to the outpatient/ palliative care ward and emergency for the first visit were enrolled into the study. Demographic data was recorded. Symptom burden was assessed using Edmonton Symptom Assessment Scale. They were asked to fill the EORTC-QLQ-C30 Questionnaire. They were followed up on 15th day and 1 month later for their symptom improvement and QOL improvement.

Result: The mean age of patients was 55 years (range 32–80 years). Carcinoma of the cervix was the most common cancer amongst all the gynaecological malignancies in our study group. Regarding the symptoms, fatigue was the most common symptom noted, causing maximum distress to the patient followed by loss of appetite. Using the EORTC QLQ-C30 v 3.0 module, the QOL was measured. The module dealt with physical, role, emotional, cognitive, and social functioning. Of all these parameters the physical parameter was the most affected.

Conclusion: There is a large unmet need of palliative care in the developing world. Gynaecological cancers form a large subset of this population. Care of patients with gynaecological cancers must take into account the quality of life. All treatment in the advanced stages of the disease should aim to improve the quality of life of the patient.

Keywords: Gynaecological cancers; palliative care

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 118: POSTOPERATIVE FATIGUE AND ITS IMPACT ON QUALITY OF LIFE IN PATIENTS AFTER GASTROINTESTINAL CANCER SURGERIES: A CASE SERIES

Vishnu Kumar Garg 1, Rohini Dattatri 1, Seema Mishra 1, Sushma Bhatnagar 1

Introduction: Postoperative fatigue (POF) is an unpleasant and distressing symptom and frequently has a major impact on the patient's quality of life (QOL). POF has major consequences on patient's well-being and thus there is considerable rationale for a proper understanding of the etiology, pathophysiology, prevention and treatment of this condition. To best of our knowledge, there have been no studies on postoperative fatigue and its impact on quality of life after gastrointestinal cancer surgeries in Indian population. Thus the purpose of the present study was to assess the pattern of POF and its impact on the QOL after gastrointestinal cancer surgeries performed at our tertiary care cancer centre.

Methods: A study was conducted of patients undergoing elective gastrointestinal surgery at the Department of Onco-Anaesthesia and Palliative Medicine, IRCH, AIIMS. Patients completed the Multidimensional Fatigue Inventory (MFI-20), the European Organization for Research and Treatment of Cancer 30-item quality of life questionnaire (EORTC QLQ-C30) before and 7th day/at time of discharge after surgery. Multiple regression analysis of determinants of change in MFI-20 total score after surgery was conducted.

Results: A series of 20 eligible patients were included in our analysis without loss in follow-up. An increase in MFI-20 total score after surgery was significantly correlated with higher preoperative fatigue and lower activity and motivation before surgery. The analysis of QOL conducted using the EORTC QLQ-C30 showed that global scale and physical function were better at the baseline. The symptom scales indicated worsened fatigue, pain, dyspnea and constipation after surgery. In contrast, however, emotional function had significantly improved after surgery. Disease stage, surgical procedure, anesthesia related factors and demographic characteristics (e.g., age, marital status, having children, educational level) were not correlated with fatigue in multivariate analysis.

Conclusion: These results suggest that worsening fatigue after surgery is associated with a decrease in physical functioning and an increase in psychological distress rather than with the cancer characteristics. Because some dimensions were made worse soon after operation and some were restored slowly, a minimum 3-month follow-up may be needed to assess the effect of gastrointestinal surgery on health-related QOL.

Keywords: Gastrointestinal surgery; postoperative fatigue; quality of life

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 119: PROFILE OF PAIN SCORE AND ANALGESIC USAGE IN CHILDREN WITH HEMATOLOGICAL MALIGNANCIES TREATED AT A TERTIARY CANCER CENTER

Biji MS 1, Vineetha Raghavan 1, Jithin TK 1, Abhina SS 1, Maya Padmanabhan 1, Chandran K Nair 1, Satheesan B 1

Introduction: Pain is one of the most common symptom in children with cancer and is usually secondary to disease and its treatment. It is usually well controlled using the World Health Organization's guidelines.

Objectives:

  1. Determining the pain score of children with malignancies at the time of admission

  2. Identify the proportion of children, treated with step 1, step 2 or step 3 analgesics for pain management and to identify those who needed escalation of analgesics.

Materials and Methods: A retrospective study of all pediatric patients (≤18 years) with hematological malignancies admitted in Malabar Cancer Centre from 1st Jan 2013 to 31st June2017 was done analyzing the medical records. Pain score was assessed thrice a day using the Numerical Pain Rating Scale or Wong – Baker FACES pain rating scale.

Results: There were 280 admission events for the 50 patients analyzed. Acute lymphoblastic leukemia was the commonest diagnosis (77.1%). 88.6% patients were treated with curative intent. The mean pain scores at admission and at discharge were 0.33 (range 0-6) and 0.13 (range 0-8) respectively. The commonest presentation of pain was generalized body ache (14.4%) followed by mucositis (13.2%). Analgesics were required in 42.1% with 26.4% requiring Step 1, 13.2% requiring Step 2 and 3.2 % requiring Step 3 analgesics.13.9% required escalation from Step 1 to Step 2 and 3.6% from Step 2 to Step 3.

Conclusion: Generalized body pain and mucositis were the common presentation of pain in children with hematological malignancies and the same could be well controlled with analgesics from WHO analgesic ladder.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 120: ASSESSMENT OF QUALITY OF LIFE AMONG CARE GIVERS AND CHILDREN WITH CANCER IN PALLIATIVE CARE SETUP AT TERTIARY CARE CENTRE: AN OBSERVATIONAL DESCRIPTIVE PROSPECTIVE STUDY

Anuradha Patel 1, Rakesh Garg 1, Sushma Bhatnagar 1, Seema Mishra 1, Nishkarsh Gupta 1, Sachidanand Jee Bharti 1, Vinod Kumar 1

Background: Paediatric palliative care deals with the holistic care of the child along with full support to the caregivers. Its main aim is to provide good quality of life (QOL) to both child as well as family members. Child health status and parents QOL goes hand in hand. Parents of children with cancer also suffers from emotional exhaustion, anxiety, depression and other mental health related issues compromising their QOL. Delay in the diagnosis, multidisciplinary approach, visits to the hospital, physical symptoms, social isolation, prolonged duration of chemotherapy, financial burden and social stigma attached with cancer are some of the hindrance that needs to be dealt with and that impairs QOL.

Objectives: To assess the quality of life among caregivers and children with cancer attending palliative care clinic at tertiary care centre.

Methods: Total of 40 children belonging to age 2-16 years of either gender with diagnosed cancer who presented to pain and palliative care clinic were recruited in the study. One of the primary caregivers of these children who were most involved in the care and support of the child were included in the study. WHO quality of life questionnaire-BREF 100 was used to assess the quality of life among caregivers of paediatric cancer patients. The paediatric quality of life (PedsQL3.0) Acute Cancer Module were used to assess the quality of life among paediatric cancer patients.

Results: The mean WHO QOL BREF score of caregivers were 57.5. The mean score of children were 67.6 with minimum score in the area of procedural anxiety. There is poor QOL among both children and their caregivers.

Conclusion: It is recommended that QOL to be assessed regularly in paediatric cancer patients during admission, during therapy and follow-up. Measures should be taken to improve QOL of both parents and their suffering children. India is a developing country and thus resources must be used judiciously. So every step of contact with the patient and their caregivers must be accompanied with psychosocial support or other kind of interventions to improve QOL and decrease anxiety. Family needs to be prepared to cope up with this stressful disease and maintain its strength by allocating responsibilities for long term care to each family member. Integration of palliative care with curative care right from the diagnosis of cancer improves quality of both child as well as caregivers.

Keywords: Cancer; cancer treatment; caregivers; paediatric palliative care; quality of life

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 121: IMPACT OF ADVOCACY IN PALLIATIVE CARE IN MAHARASHTRA, INDIA

Pradnya Talawadekar 1, Mary Ann Muckaden 1

Background: There is an increasing need for Children's Palliative Care in a developing country like India with the growing incidences of children suffering with life limiting and life threatening conditions and thereby to address the needs and issues of children and families.

Advocacy functions as an important and effective tool in developing an integrated model based on child specific guidelines, standards and services in their place of care as the needs of children are very different from those of adults. There is very little awareness about Palliative care in health care workers and law makers.

Methods: The Children's Palliative Care (CPC) Project of DFID- HtH- ICPCN- Tata Memorial Centre and IAPC was a 5 year Advocacy based project (2010 – 2015) in Maharashtra, India. The project was continued by seeking funding from BKT Industries thereafter. Various educational and advocacy activities have been organised to sensitise the stakeholders.

Results:

  • Government of Maharashtra has started Palliative Care Cell

  • Various NGOs are coming forward to start services of Palliative Care

  • Teaching institutions and hospitals are showing interest in developing palliative care centres

  • Nurses, social workers and counsellors are taking interest in expanding the services.

Conclusion: Advocacy is a major pillar for spreading awareness about Palliative Care. The advocacy efforts of the project have played a vital role in putting Pediatric Palliative Care on the map of Maharashtra, India.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 123: A CROSS-SECTIONAL STUDY OF SPIRITUAL NEEDS ASSESSMENT IN PRIMARY CAREGIVERS OF PEDIATRIC PATIENTS WITH ADVANCED CANCER AT TERTIARY CARE CENTRE

Nandan Choudhary 1, Puneet Rathore 1, Sushma Bhatnagar 1, Seema Mishra 1

Background: Childhood cancer has an enormous impact on the lives of children and their families, forcing them to face stressful experiences, full of anguish, fear and suffering. But knowledge of the spiritual care provided to caregivers of pediatric patients within hospital is limited.

Objective: (1) To assess spirituality in primary caregivers of pediatric patients.

Methods: A cross sectional study using Functional assessment of chronic illness therapy-spiritual wellbeing scale (FACIT-sp) to assess spirituality in primary caregivers of children with advanced cancer at IRCH, AIIMS, New Delhi. Only caregivers of pediatric patients (<18 years) were included in the study, diagnosed at least one month back. Nonparametric test will be used to compare various measures of spirituality.

Results: 60% participants believed in God, when asked about “what gives your life meaning?” 80% responded “their family”. 70% believed spirituality help in coping with stress, 50% had feelings of guilt, 60% participant's main concern was their child's health, 30% had anger towards God. None of them was ever assessed about his/her spiritual concerns.

Discussion: There is a big lacuna in addressing spirituality in caregiver of pediatric cancer patients. The majority of caregivers have religious and spiritual needs and this finding is similar with other studies.

Conclusion: Proper assessment of spiritual needs is important as a part of total care to improve the quality of life of caregivers and pediatric patient.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 124: PURPLE URINE BAG SYNDROME: A SCARY BUT EASILY MANAGEABLE CONDITION IN PATIENT WITH PROLONGED IN-DWELLING URINARY CATHETER

Dinesh Kumar 1, Namrata Donga 1, Rekha Macwan 1

Introduction: Bed ridden patients on indwelling urinary catheters are at risk of urinary tract infection (UTI). One rare presentation of UTI could be sudden appearance of dark purple coloured urine in the catheter and bag in otherwise asymptomatic patient. This condition referred to as “Purple Urine Bag Syndrome” (PUBS) could be very scary and distressing to the patient and family. Here we present report of a PUBS in a lady with advance cancer of breast.

Case Description: A 56-year-old lady with carcinoma of left breast (since 1 year) and metastasis in vertebrae and liver was bed ridden, with pain well controlled. She had constipation and was laxatives. She was on Foley's catheter for 9 months. Last catheter change was done 3 weeks back. Patient's daughter reported the urinary bag being filled with purple coloured urine in the morning [Figure 1]. She had no other symptoms suggestive of UTI. The family refused bringing her to hospital for any further investigations or treatment. Family shared the pictures of urine bag and catheter on WhatsApp. She was hypertensive. A provisional diagnosis of PUBS was made and she was started on Tab Nitrofurantoin 100 mg twice daily for 2 weeks. The family and patient were counselled about the benign nature of the condition and to increase fluid intake. By third day the urine had become light coloured and was back to normal by end of the week.

Figure 1.

Figure 1

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Urine bag with catheter

Conclusion: PUBS can be managed easily at home with simple antibiotics, adequate hydration and family/patient counselling in palliative care setting.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 125: PREVALENCE AND CHARACTERISTICS OF FALL IN ELDERLY PEOPLE IN RURAL THIRUBHUVANAI, PUDUCHERRY

Padmavathy L 1, Balabaskaran S 1, Dongre AR 1

Background: In Pondicherry due to rise in life expectancy, there is increase in population of elderly. Fall among old people leading to injury is a preventable condition. However, there is limited understanding on this topic in our context.

Objectives: To find out the prevalence and characteristics of fall in the elderly people.

Methods: The present cross-sectional study was done in villages of Primary Health Centre (PHC) Thirubhuvanai in Pondicherry. A representative sample of 342 elderly (> 65 years) were interviewed by using pre-designed questionnaire by trained post-graduates in community medicine. The respondents were asked for history of fall in last one year and were asked for nature and circumstances leading to fall. The study was approved by Institutional Ethics Committee. Frequencies of variables were obtained by using Epi Info software (Version 7.2.1.0).

Results: The mean age of elderly sample was 71.46 (+ 6.65) years. About 91 (26.6%) elderly reported fall in last one year. Lower extremity 33 (36.3%) was the common site of injury and contusion 59 (64.8%) was the common nature of injury. Two–third of falls happened outside home and it was mostly 24 (26.4%) due to tripped in road. Majority of the fall occurred in morning hours 38 (41.7%) and during the summer 76 (83.5%) season.

Conclusion: In this study, one third of the elderly people reported fall. Most of the falls happened outside the home during morning hours of the summer season. This information might help in planning preventive strategy for fall.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 126: IMPACT OF PSYCHO-SOCIAL SUPPORT TO IMPROVE THE QUALITY OF LIFE AMONG GERIATRIC PATIENTS

Reshma Ramachandran 1, Rajagopal MR 1, Nair KN 1

Introduction: Psycho-social issues faced by the elderly In India demand urgent attention in view of the rising numbers of elderly population and the gradual, but steady urbanization resulting in loneliness of the elderly.

Objective: To assess psychosocial issues among the elderly needing palliative care and the impact of psycho-social support.

Methods: Using case study method, data were collected with questionnaire during interviews both in a hospital setting and in home visits. The questionnaire was designed to assess family background, history of substance abuse, childhood history, behavior, speech and emotional status including anxiety, depression, attitude, fears, mood and suicidal ideation. Challenges to dignity, social functioning and spiritual well-being were also key components of assessment. Based on information received, counselling and education were provided to both patients and care givers with regular follow up. Periodical physiatrist and psychiatrist visits were arranged to improve their quality of life.

Results: The intervention helped most patients to recall memories of joy and life-worth. We found that psychosocial support helped them to understand their strengths, sources of comfort, hope and concerns creating a positive impact on life. There was also improvement in self-esteem and confidence of patients and reduced compassion fatigue of family members.

Conclusion: Psycho-social support and spiritual care are essential aspects of palliative care to improve quality of life of geriatric patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 127: GERIATRIC CARE AND PALLIATIVE CARE

Bhoopathy D 1, Mythilee Girish 1, Manjunath 1

Introduction: All Cancer, Schizophrenia, Alzheimer, dementia, HIV patients need palliative care. They all suffer from muscular atrosophy, motor neuron disease, memory loss, pain in sensory perception etc., their physical and mental status is assessed by various tests, such as Deficit-accumulation frailty index (DAFI), Comprehensive geriatric assessment (CGA) and Assessment of daily living (ADL). The Maintenance and welfare of Senior Citizen Act 2007, Mental Health Act 1987 and present Mental Health Service Act 2017 empowers the geriatric patients to have preferential treatment in the hospitals. Under these acts the State has got duty to provide geriatric health care units in village panchayat mandals and district levels with regular care training to the communities. Also, equipping the family members with care skills. Under mental health care bill 2016 it is mandatory to establish geriatric mental health program units in every district with psychiatrist, psychologist and social workers. The general hospitals with PSW to provide free medicine. Baptist hospital got separate geriatric wing to screen patients and they do attend the rural and urban patients in their social work schemes. Karnataka Govt established geriatric health program units in all district in 2016. Still the infrastructure is in incubation period. In Karnataka there are 91 old age homes and numerous senior citizen flats like Coimbatore Nanna, Nani colonies, elderly care centers, destitute homes, ashrams etc. The elder care centers are having doctors and nurses, but not many geriatric doctors and nurses. Structured, designed care team service and rehabilitations activities are at minimum level.

Aim: Sensitize the family members and public about geriatric palliative care necessity to the terminally ill patients.

Methodology: The inmates of three old age homes in Bengaluru urban area including one care center, one Ashram and a beggar colony were orally interviewed. They were asked about the geriatric counseling, awareness of the law acts, the facilities provided to them and satisfaction about palliative care services.

Results: Irrespective of the care centers facilities, they feel loneliness and need counseling. Lack of geriatric team visits, and lack of rehabilitation activities their life style is dull. They look like well-preserved antics. Majority unaware of the legal heath facility available to them. They don’t want to be segregated as separate class in the society.

Conclusion: There is a need for senior citizens resource and support centers, NGO groups and more mental health awareness programs to facilitate more geriatric palliative service. All the geriatric mental health service statistics should be connected by mobile health (m Health) services. Nurse's community members ought to be trained in geriatric palliative care.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 128: OPIOID ACCESSIBILITY: STILL A DREAM COME TRUE IN PUDUCHERRY

Srikanth S 1, Latha Srikanth 1

Introduction: About 80% of patients with advanced cancer develop significant pain and 66% of them have no access to opioids for pain control. Barriers to opioid accessibility in India are complex and multifactorial. Restrictive policies regarding opioids procurement are one among them. We share the experience of opioid accessibility in our palliative care unit, functioning in a private institution in Puducherry.

Method of Pain Assessment: Pain assessment for patients is done using Numerical Rating Scale and analgesics are provided as per WHO Analgesic Ladder. Oral morphine is prescribed for pain score >7/10.

Discussion: Three fourths of the patients in the last one year (73.6%) had incurable cancers. About 46.4% of them were started on morphine. Most (60.7%) of the patients were non residents of Puducherry and belonged to Tamilnadu. After initiating on morphine, irrespective of the residence status, the patients were referred to Regional Cancer Centre (RCC) in Puducherry for further continuation of morphine.

Even though the 1985 NDPS act of opioid procurement had been amended in 2014, still we have to follow the old procedure of applying through Excise Department. As part of sensitization on NDPS 2014 amendment guidelines, two State level workshops for Government and Private stakeholders were conducted. Nevertheless, the amendment process is hindered pending clearances between health, law, excise departments and office of the higher authorities of the State. Lack of a simple and realistic system for implementation of the amended rules still impedes the Dream Come True status in opioid accessibility in our State.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 129: VALIDITY AND RELIABILITY OF THE HINDI VERSION OF THE PATIENT ASSESSMENT OF CONSTIPATION QUALITY OF LIFE QUESTIONNAIRE IN CANCER PATIENTS ON OPIOIDS FOR PAIN MANAGEMENT AT TERTIARY CARE CENTER, INDIA

Ram Singh 1, Seema Mishra 1, Sushma Bhatnagar 1

Introduction: Opioid use is frequently associated with opioid induced constipation (OIC), which has great impact on quality of life of an individual. In 2005, Marquis et al.[1] developed and validated the Patient Assessment of Constipation Quality of Life questionnaire (PAC-QOL), in English, to evaluate quality of life specifically in patients with constipation, and this questionnaire has since been widely used in clinical studies of constipation. The questionnaire was also validated later by Nomura et al.[2] and Bengi et al.3 in Japanese and Turkish language respectively. In this study, we want to validate a Hindi version of the PAC-QOL (PAC-QOL) and to assess its psychometric properties in Indian patients with opioid induced constipation.

Objective: To assess the validity and reliability of PAC-QOL (Patient Assessment of Constipation Quality of Life) questionnaire translated in Hindi language for Indian patients.

Materials and Methods: This is a prospective, cross sectional observational study. The patients who were on opioid treatment ranging from last two weeks to six months and had witnessed change in their baseline bowel habit since the treatment with opioids were enrolled for study. The patient's demographic details, duration of opioid treatment, class of opioid, dose, laxatives use etc. and other relevant information were documented. Severity of constipation was assessed by the physician as per CSS (Constipation Scoring System) questionnaires and quality of life by filling a self-administered PAC-QOL (Patient assessment of constipation and Quality of Life) questionnaire performa by patient. At Follow up Visit after two wks same procedure was repeated. All information obtained was documented. The psychometric properties of the PAC-QOL determined in terms of reliability and concurrent validity.

Results: The interim data collected till January, 2018 [Table 1], Internal consistency was assessed in all 152 patients. Cronbach's alpha was >0.7 for the overall score and ranged from 0.56 to 0.79 for four subscales, showing a strong internal consistency for overall score.

Table 1.

Characteristics of patients with opioid induced constipation (n=152)

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For the test–retest study only 30 patients were available and the intraclass correlations coefficient was calculated for the overall and for subscales showing a moderate degree of positive correlation between PAC-QOL score at first visit and second visit within mean interval of 17.7 ± 5 days [Table 2].

Table 2.

Reproducibility (test-retest study)

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For determining the concurrent validity between PAC-QOL and CSS, the value of Pearson correlation coefficients ranged between 0.47 and 0.84 and P < 0.001 for overall score and four subscales showing significant correlation between the scores [Figure 1]

Figure 1.

Figure 1

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Pearson's Correlation coefficient between overall patient assessment of constipation and quality of life score and constipation scoring system score R = 0.74, P < 0.0001

Conclusion: The currently available data and its statistical analysis suggest that though the PAC-QOL in Hindi version is reliable and also valid, but to establish strong degree of reliability and validity it is imperative to continue the study and achieve a greater sample size.

REFERENCES

  1. Marquis P, De La Loge C, Dubois D, McDermott A, Chassany O. Development and validation of the patient assessment of constipation quality of life questionnaire. Scand J Gastroenterol 2005;40:540-51.

  2. Nomura H, Agatsuma T, Mimura T. Validity and reliability of the Japanese version of the patient assessment of constipation quality of life questionnaire. J Gastroenterol 2014;49:667-73.

  3. Bengi G, Yalçın M, Akpınar H, Keskinoğlu P, Ellidokuz H. Validity and reliability of the patient assessment of constipation quality of life questionnaire for the Turkish population. Turk J Gastroenterol 2015;26:309-14.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 130: PRESCRIBING PATTERNS OF TAPENTADOL IN PALLIATIVE CARE IN A TERTIARY CANCER CENTRE

KR Vinayak 1, Ghoshal A 1, Deodhar JK 1, Damani A 1, Salins NS 1, Muckaden MA 1

Introduction: Tapentadol is a synthetic novel analgesic acting both as an opioid receptor agonist as well as norepinephrine re-uptake inhibitor. Its use has not been well documented in palliative care in India.

Objectives: To describe the prescribing patterns of Tapentadol in 50 patients on palliative care in a tertiary cancer centre.

Methods: Data was collected from electronic medical records and chart reviews; descriptive statistics was used for summarization, paired t-test for comparison of Numerical Rating Scale (NRS) scores.

Results: The 50 patients had a mean age of 49 years, 28 (56%) were male, 21 (42%) hailed from Maharashtra, 34 (68%) had cancer of Gastro intestinal tract, 20 (40%) were ECOG2, with 6 (12%) each having Diabetes Mellitus 1 and Hypertension on medication. Median serum values: creatinine 0.9 (SD 0.2) mg/dl, albumin 3.1 (SD 0.8) g/dl, bilirubin 0.8 (SD 5.1) mg/dl.

Tapentadol tablets were prescribed with a mean dose of 71.9 milligrams/day, 33 (66%) patients received 50 milligrams tablets 3 times a day.

Nociceptive pain scores were measured by NRS at an interval of 1 week. Change in mean NRS was 4.2 (from 5.5 to 1.3) (P < 0.001). Other analgesics used are listed in Table 1.

Table 1.

Other analgesics used

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Side effects (Common Terminology Criteria for Adverse Events (CTCAE) Version 4.0) associated were Grade 1 nausea and vomiting (seen in 8 (16%) patients).

Conclusion: Tapentadol is an effective analgesic and can be safely administered in palliative care practice.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 131: OUR PRELIMINARY EXPERIENCE WITH METHADONE IN CANCER PAIN

Krimal Patel 1, Pratima Agarwal 1, Anjum Khan Joad 1, Pushplata Gupta 1, Vinita Jain 1

Introduction: Methadone is a cost-effective option for severe cancer pain. Use is complicated by the long half-life and drug interactions.

Objectives: To study the efficacy and safety of Methadone in severe cancer pain.

Methods: Study design: observational study of 40 patients, Palliative care department, BMCHRC, Jaipur.

Adult patients with severe pain who were able to take drug by oral/enteral route were included.

Methadone Initiation Group I (n = 10) Methadone was initiated for severe cancer pain with syrup methadone with lowest dose (2.5 mg/day). Methadone titration Group T (n = 30) patients using morphine were gradually shifted to methadone (1:10 ratio), titrated as per response within 72 hrs along with regular monitoring of vitals, adverse drug reactions and ECG.

Patients were initially admitted for 3 days. Follow up on day 5, 7, 14 for pain relief and adverse reactions. Morphine was used as a rescue for severe pain in both groups.

Results: In Group I (N = 10) 4 patients had good pain relief from day 1 while 6 patients required dose titration on 3rd day and satisfactory pain relief on day 7. In Group T (N = 30), 13 patients had good relief from initial treatment, 8 patients were relieved on further titration after 7 days. Four required multiple rescue Morphine doses. One patient was not satisfied. There were some practical difficulties with dispensing medication.

Conclusion: Oral Methadone is a cost-effective, safe treatment option in cancer patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 132: CAREGIVER'S PERCEPTION ABOUT INFORMATION DISCLOSURE TO TERMINALLY ILL CANCER PATIENTS

Jothimani Chinnaswamy 1, Lakshmi Prabha Srinivasan 1, Anand Narayan Chinnachamy 2

Introduction: An open communication is vital in the care of terminally ill cancer patients, who often suffer from multidimensional distress. In India, unlike western countries, family members play a very significant role in deciding on treatment options and what information needs to be conveyed to patients. Going against them and trying to impart the correct information to patients which is a legal and moral requirement often results in dissension and conflict.

Objective: The objective of this study was to measure the amount of iinformation the family members of the terminally ill where willing to share with the patients.

Materials and Methods: A semi-structured questionnaire consisting of polar and multiple choice questions based on communication and information disclosure to the cancer patients was distributed to the primary caregivers after obtaining a written consent during their first visit to palliative care unit.

Results: Out of the 50 respondents, (44)88% expressed that the doctors have to initiate the conversation first. 90% said the doctor should inform about the nature of treatment during each visit. 78%, 76 % and 74% did not want to inform about diagnosis, prognosis or treatment options to the patients respectively. Only 9 respondents (18%) felt that the patients need to be informed even when the disease becomes incurable as this would help them to fulfil their last wishes. The rest 41 (82%) denied information based on the following grounds, 44% felt it will increase the sufferings, 22% said the patient cannot handle the situation, and 16% felt it will be an unnecessary burden to the patient to think about the expenses and financial situations.

Conclusion: The prospective result showed that most of the caregivers wanted to deny information to the patient, emphasising the need for education to the public on open communication with patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 133: ROLE OF PALLIATIVE CARE IN CARE CONFERENCES IN A TERTIARY REFERRAL HOSPITAL IN INDIA: A RETROSPECTIVE CASE NOTE ANALYSIS

Sunitha M Daniel 1, Arun Vivek 1, Charu Singh 1, Chitra Venkateswaran 1

Introduction: Care conferences are team meetings held for every person receiving health care in hospital or other care facility. It involves the patient, carers and family and it facilitates sharing information and working together to meet the person's needs. Successful communication is an important component of the process which results in appropriate decisions being made in relation to available care resources. Integrating early palliative care with cancer treatment improves quality of life and survival. Effective communication among physicians, patients and their loved ones is crucial to end-of-life, hospice and palliative care discussions. The palliative care team in our hospital has been actively involved in the care conferences organised by various specialities.

Objectives: The aim of this study as the evaluate the role of the specialist palliative care team in care conferences held in a tertiary referral hospital.

Methods: A retrospective case note analysis as completed on the care conferences conducted in the hospital over a period of 6 months.

Results: The team were involved in the care of 14 patients during this period. The median age was 44; the youngest patient was of 6 months of age. Our team was involved in discussion around goals of care and discharge planning. The median duration from admission to conference as 17 days while the duration to discharge was 3.5 days. The outcome of meeting varied from agreeing for best supportive care, decisions about not attempting resuscitation, early shift out from intensive care unit and facilitating discharge home with involvement of home care team.

Conclusions: Specialist Palliative care team has an important role in initiating and leading care conferences to enable better communication between specialities and provide quality care to patients and families.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 134: THE NEED FOR PALLIATIVE CARE IN COMPLEX HUMANITARIAN EMERGENCIES: EXPERIENCES FROM ROHINGYA SETTLEMENTS IN BANGLADESH

Megan Doherty 1, Farzana Khan 1

Introduction: Globally, more than 128 million people required life-saving humanitarian assistance. Palliative care is especially needed in humanitarian crises due to mass casualty events, infectious disease outbreaks with high mortality, and individuals with life-threatening illnesses who are displaced in such events.[1] Recently efforts to develop an Essential Package for Palliative Care which would incorporate the principles of palliative care, into the standard humanitarian response have been initiated.[2]

Objectives: The primary aim of this study was to assess the palliative care situation in Rohingya refugees in Bangladesh.

Methods: Semi-structured interviews were conducted with refugees with life-threatening illnesses.

Results: We interviewed 155 individuals, with the following life-threating conditions: severe physical disabilities (66%), drug-resistant tuberculosis (24%), cancer (9%), and HIV/AIDS (2%). Patients reported their greatest needs to be medication (97%), money (94%), food (76%), pain relief (45%), and someone to help care for them (44%). Physical pain was very common (66%), and the intensity was often severe (44%) or moderate (41%). No patients reported having received opioids, instead paracetamol (32%) and NSAIDs (9%) were the most common pain treatments. Pain treatment was frequently ineffective; 73% still had moderate or severe pain after treatment.

Conclusions: There is a significant need for palliative care services in Rohingya refugees in Bangladesh. There is a lack of adequate pain treatment, especially opioids, and many patients require support for their basic needs, including food and money. Community based palliative care programs, are a cost-effective way to reduce the burden of preventable suffering in individuals with life-threatening illnesses, in a humanitarian crisis.

REFERENCES

  1. Powell RA, Schwartz L, Nouvet E, Sutton B, Petrova M, Marston J, et al. Palliative care in humanitarian crises: Always something to offer. Lancet Lond Engl 2017 15;389:1498-9.

  2. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: The Lancet Commission report [Internet]. Available from: http://www.thelancet.com/commissions/palliative-care. [Last accessed on 2017 Dec 08].

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 135: THE CONCERNS OF NURSES IN USING SYRINGE DRIVERS TO DELIVER CONTINUOUS SUB-CUTANEOUS INFUSIONS IN AN IN-PATIENT HOSPICE SETTING

Maria Sonia Louis 1, Penny Johnson 1, Sangeetha SN 1, Jeremy R Johnson 1

Introduction: Whilst continuous sub-cutaneous infusion (CSCI) is well established in Palliative Care in the west, in India it is still a relatively new concept because of the cost of the syringe drivers and the lack of familiarity in their use. Two years ago we were donated ten M26 Graseby drivers and after initial training for doctors and nurses they were put into use.

Objective: To elicit initial and ongoing concerns and determine the impact of their use.

Methods: Semi-structured questionnaires, in focused group discussions, with trained nurses involved, one month, six months and one year after their introduction into regular use.

Results: The initial concerns were:

  • Having to learn a completely new procedure

  • Doubt regarding the efficacy of syringe drivers

  • Surprise that different medications could be mixed and given this way

  • The four-hourly monitoring would be burdensome and detract from other patients

  • Making mistakes in calculating the doses/drugs

  • Patients’ tolerance.

With ongoing supervision and training, the above concerns were allayed as confidence and familiarity increased.

All the nurses indicated surprise at how effective CSCI could be in controlling symptoms, particularly Pain, Nausea and vomiting and in restless/disorientated patients.

They felt their work burden had been reduced, that patients needed considerably less injections.

Conclusions: Felt a very positive impact on their ability to care for patients. However regular training and supervision needed.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 136: CELIAC PLEXUS BLOCK AND ORAL ANALGESIC VERSUS ORAL ANALGESIC FOR UPPER ABDOMINAL CANCER PAIN: FACTORS INFLUENCING PAIN AND QUALITY OF LIFE

Preeti Singh 1, Sushma Bhatnagar 1

Background and Aims: Neurolytic celiac plexus block (NCPB) is claimed to be an effective method of pain control for upper abdominal cancer pain. However, the factors that may influence long-term analgesia, adverse effects, and quality of life after performing NCPB.

Materials and Methods: A retrospective study at AIIMS IRCH palliative care unit, 15 patients who underwent celiac plexus block in 6 months period were followed up to 3 months. Numerous parameters other than pain and symptom intensity were evaluated, including age, gender, initial site of cancer, sites of pain. Indices were calculated to determine the opioid consumption ratio and the trend of opioid escalation before and after the celiac plexus block.

Result: celiac plexus block was effective in reducing opioid consumption and gastrointestinal adverse effects for at least 4 weeks follow up period in all 15 patient. NPCB, performed by skilled clinicians, and is a safe and useful means that should be considered as an adjuvant to common analgesic regimens at any stage of cancer, as it may allow the reduction of the visceral component of abdominal cancer pain. The analgesic and symptomatic effect of NCPB is presumably advantageous for about four weeks.

Conclusion: Although sample size is smaller for the conclusion of superiority of pain relief over analgesic therapy, the fact that CPB causes fewer adverse effects than opioids is important for patient's quality of life imrovement.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 137: GLOSSOPHARYNGEAL NERVE PULSED RADIOFREQUENCY ABLATION AND ORAL ANALGESICS VERSUS ORAL ANALGESICS ONLY FOR PAIN MANAGEMENT IN HEAD AND NECK MALIGNANCY: A RETROSPECTIVE STUDY

Manisha Pandey 1, Sushma Bhatnagar 1

Background and Aims: Head and neck cancer (HNC) is the 6th most common cancer type in the world[1] and persistent pain associated with it leads to deterioration in quality of life. Pulsed Radiofrequency Ablation (RFA) is claimed to be an effective method in controlling pain for HNC and thus improving the quality of life.

Materials and Methods: It was a single centered retrospective study at AIIMS IRCH Palliative Care Unit. 19 patients who underwent Glossopharyngeal Nerve RFA in 6 months were followed upto 3 months. Apart from pain characteristics and symptom burden other parameters such as age, gender, stage and site of cancer were also evaluated. Indices were calculated to determine the opioid consumption and the need for opioid escalation before the procedure, immediately after the procedure and in subsequent visits.

Result: Glossopharyngeal Nerve Pulsed RFA was effective in reducing the need for opioid and adjuvants and thus reducing its associated side effects in all 19 patients on an average for 4 weeks. There was adequate relief of pain even during swallowing and chewing.

Conclusion: Glossopharyngeal Nerve Pulsed RFA can be considered in the management of pain of HNC as it has reversible side effects like hoarseness of voice and pain at the site of RFA and is devoid of gastrointestinal side effects. Although due to small sample size superiority of pulsed RFA over analgesics in the management of HNC pain cannot be concluded completely.

REFERENCES

  1. Bianchini C, Maldotti F, Crema L, Malagò M, Ciorba A. Pain in head and neck cancer: Prevalence and possible predictive factors. J Buon. 2014;19:592-7.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 138: DEVELOPMENT AND DELIVERY OF AN OUT PATIENT CLINIC: A HOLISTIC MODEL FOR PALLIATIVE AND SUPPORTIVE CARE FOR CHILDREN WITH CANCER

Huma Anis 1, Abhishek Kumar 1, Ankit Taluja 1, Tenzing Chuki 1, Lindsay Crack 1, Ramandeep Singh Arora 1, Poonam Bagai 1

Background: Children were coming to the Cankids Pediatric Palliative Care Center in Delhi for inpatient admission and ambulatory care IV antibiotics due to patient overload or on holidays/weekends at the Treating Center. Other Cankids Social Support services were largely being offered at the hospital itself. The palliative OPD was seeing low numbers.

Objectives: To run a Social Support OPD providing holistic care and strengthening Palliative Care Outpatient and Inpatient Service.

Methods: The pilot phase of OPD (Mar-Sep 2017) supplemented the ambulatory care service with additional access to Pain, Symptom, Wound Management, Psychological and Nutritional Counselling, Physiotherapy, Educational, Financial Support and Patient Navigation along with care giver education by a trained professional team. The OPD operated 7 days a week, with 68 clinics, providing 11 services.

Results:

  • 1204 patients received 7101 episodes of care

  • 195 (16%) patients received Palliation of symptoms

  • Indication for inpatient admissions in 8 out of 64 were for end of life care. 23 (62%) of 37 new inpatient admissions were from the OPD

  • 261 (57%) of 456 patients who came for IV Ambulatory Carereceived other social support services

  • 25 Patient care sessions were attended by 347 parents/caregivers

  • 62.6% participants were extremely satisfied and 37.6% satisfied with services provided.

Conclusion: A well run Social Support OPD together with Palliative care Physicians and Nurses at the Pediatric Palliative Care Center provides enhanced holistic care and a better understanding and acceptance of palliative care. It also provides a platform and the time for parent education on how to care for their child during treatment at home and in the hospital setting.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 139: CHEMOTHERAPY INDUCED ORAL MUCOSITIS-INITIAL EXPERIENCES: A CASE SERIES

Vikram Pratap Singh 1, Seema Mishra 1, Sushma Bhatnagar 1, Nishkarsh Gupta 1, Sachidanand Jee Bharti 1, Rakesh Garg 1, Vinod Kumar 1

Background and Aims: Oral mucositis, a progressive, inflammatory and ulcerative condition of the mucous membranes, is one of the common side effect of systemic Chemotherapy and radiotherapy in patients with cancer. Oral mucositis occur in 20-40% of patient receiving chemotherapy and its prevalences increased up to 80% in bone marrow transplant patients. Severe oral mucositis is painful and affects oral functions including intake of food and medications and difficulty in speech. Prevention of oral mucositis affects the quality of life in cancer patients.

Methods: We report a series of twenty five cases of chemotherapy induced oral mucositis.

Following parameters were documented:

  • WHO oral mucositis grading

  • Pain according to Numeric rating scale (NRS)

  • Adverse effects of analgesics like constipation, dyspepsia, sedation if any was be recorded.

Result: 25 patients were observed for total 7days of duration. Data was collected on 3rd and 7th day.

  • At the time of presentation 13 patient were in severe pain (NRS 9/10), 3 and 9 were in mild (NRS 3/10) and moderate pain (NRS7/10) respectively

  • Patient with mild pain received supportive measures while patients with moderate and severe pain received tramadol and morphine respectively

  • At the time of 3rd days follow up there were only 12 patients in moderate and rest of them were in mild group while at 7days follow up all the patient were in mild group

  • All patients were given triple gargles (syrup benadryl, syr lidocaine viscous and sod. bicarbonate).

Conclusion: Oral mucositis is very common after chemotherapy. If patient receive adequate amount of opioid along with supportive care for the pain associated with the mucositis this will alleviate the pain and improve the quality of life.

Keywords: Numeric rating scale; oral mucositis; pain; symptom burden

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 140: OCTREOTIDE RELATED POSTERIOR REVERSIBLE ENCEPHALOPATHY SYNDROME: A CASE REPORT

Rahul D Arora 1,2

Introduction: Steroids are considered the backbone of management of complications of Immunotherapy. Posterior Reversible Encephalopathy Syndrome has been reported in cancer patients recieving Immunotherapy, chemotherapy and high dose steroids.

Case Details: A 31 year old female, a known case of adenocarcinoma colon presented with symptoms of malignant bowel obstruction. Nasogastric tube was inserted. She was started on pharmacological management consisting of antiedema measures (inj dexamethasone 8 mg iv three times daily), anti secretory (inj octreotide 100 micrograms three times daily) and WHO step three analgesic medication. On day 8 she developed an episode of witnessed generalised tonic clonic seizure preceded by an episode of flash of lights and blurring of vision. Her vitals immediately after the episode were normal. She was started on Inj Phenytoin 100 mg three times daily. MRI revealed findings of linear hyperintensities in the bilateral cortical and subcortical white matter in the posterior high frontal and occipital lobes. An elevated trend in blood pressure recordings was noticed upon review of records. The patient was started on Tab Labetalol 100 mg two times daily and the dose of dexamethasone was tapered to 4 mg three times daily. Octreotide was stopped on day 12.

Discussion: A diagnosis of Posterior reversible encephalopathy syndrome was made after a radiology and neurology consultation. A score of 3 (possible causation of octreotide with PRES) was obtained on Naranjos algorithm. The role of steroids and somatostatin analogues in this setting is a subject of further research.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 141: COLLUSION IN PALLIATIVE CANCER CARE

Roshan Sutar 1, Prabha S Chandra 1, Prabha Seshachar 1, Linge Gowda 1, Santosh K Chaturvedi 1

Introduction: Collusion is frequently encountered but least studied entity in palliative care services in India. Impact of collusion is manifold and identifying it requires good communication skills (1 and 2). Once identified, it gives an indication for existing healthy versus developing unhealthy collusion in families.

Objectives: We describe systematic identification and breaking of collusion across multiple levels in a palliative cancer care facility in India and hurdles encountered during same.

Methods: We conducted cross sectional interview of 62 cancer families over 8 months by using structured interview, EUROQOL-5D level 3, Visual Analogue Scale and NIMHANS psychiatric morbidity screening tool (7 items).

Results: It was found that collusion exists at all three levels. 71% collusion exists between doctor and patient, 61.3% between doctor and caregiver and 75.83% between patient and caregiver. Around 50% collusions were identified as unhealthy and dealt with to impart quality of life to patient and caregivers.

Conclusions: Collusion goes unnoticed in terminal illnesses and communication skills play a major role in identifying and dealing with collusion. This also unearths need to formulate interview techniques and structured assessment tools or questionnaire in palliative cancer care.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 142: EARLY PALLIATIVE CARE IN HEAD AND NECK CANCERS

Pankaj Singhai 1, Naveen Salins 1, Muckaden MA 1, Kumar Prabhas 1, Vijay Patil 1, Amit Joshi 1, Vanita Naronha 1

Background: Head and neck cancers are most common malignancy in males in India. Patients with advanced head and neck cancers suffer lot of symptom and distress during oncologic treatment. This study evaluates effect of early palliative care intervention in advanced head and neck cancers.

Methodology: A randomised controlled trial was conducted comprising adult patients with advanced head and neck cancers planned for palliative chemotherapy. All patients were assessed at baseline for QOL (FACIT-HN) and symptom burden (ESAS-r) along with demographic details. All patients were followed up monthly for 3 months. Descriptive statistics, comparison of baseline and follow up data, and log rank test for survival comparison were performed.

Results: A total of 50 patients were randomised with 25 patients in each arm. There was no significant difference at baseline in quality of life (FACT HN- 83.14 vs. 85.78) and symptom control (ESAS-r- 25.48 vs. 22.56). There was no significant difference in mean change in quality of life between two arms at 12 weeks (-2.98 vs. -0.06 P = 0.77). Change in symptom burden were also not significantly different between arms at 12 weeks (3.41 vs. 0.00 P = 0.6). There was no difference in overall survival in two arms.

Conclusion: Early palliative care integration in head and neck cancers did not improved quality of life, symptom control and survival. As very small sample size been evaluated here, a larger multicentred RCT needs to be conducted to ascertain efficacy.

Keywords: Early palliative care; head and neck cancers; quality of life; randomised controlled trial

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 143: DNIPCARE'S PALLIATIVE HOME CARE AND OP CLINIC: A METROPOLITAN EXPERIENCE

Suresh Thaliyaril 1

Background:

  • Unique NCT of Delhi

  • Area 1483 Sq. kms- 591.91 Rural and 891.09 Urban

  • High Migrant population

  • World class health facilities

  • Curative and preventive protocols only

  • No supportive facility with tertiary care/independently

  • Very few voluntary charitable and Cancer Palliative organizations.

Non-communicable Diseases:

  • Cardiovascular diseases (like heart attacks and stroke)

  • Cancer

  • Chronic respiratory diseases (Chronic Obstructed Pulmonary Disease and Asthma) and

  • Diabetes

  • Acute Renal Failure.

Long Term Bedridden Patients Other Than Cancer Patients:

  • No takers for them

  • Nor any statistics available on existence of such homebound patients.

Conception of DNipCare in 2008:

  • Community based Voluntary Palliation

  • Kerala Model Palliative Care customized to Delhi environment

  • Long term, bedridden, terminally ill patients including Cancer Patients

  • Optimal usage of Community volunteers’ potential

  • Volunteers from different strata of the society (Working Professionals, Home Makers, Students etc.,).

Methods:

  • Weekend Palliative Home Care

  • Evening visits on week days on emergency

  • Outpatient Clinic with Consultation and Medicines (both free).

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Achievements

Advantages in metropolitan city like Delhi with Nuclear families:

  • Week days – Family members away for earning lively-hood

  • Weekends – Able to see and integrate them with patients

  • Neighbours - Get alerted about existence of such patients in colony (urban malady)

  • Volunteers - At ease to utilize spare time for patients.

  • Sundays - Holidays for other palliative care initiatives

  • Nurses/Doctors led Home Care teams

  • Mobilizing the Voluntary Services of serving and Retired Doctors/Nurses

  • Volunteers Monthly Review meeting on every second Saturday

  • No overheads

  • Focussed resource management in Patient Care with Unique Finance Management

  • Cash Book depicting the activities in the public domain www.dnipcare.org

  • Ensuring Transparency for beneficiaries and benefactors and for Public to scrutinize

  • Expenditure on administration is <2%.

  • Inculcating culture and discipline of Palliation in professionals, students, home makers and the common people

  • Milestone achievement of exploring volunteerism and fellow-feeling of common people.

Conclusion:

  • Money, Infrastructure, Convenience etc., are immaterial when Determination takes the stage of Palliation for ailing patients

  • So an easy replicable model here

  • Join to serve the hapless; Hope, Strength and Facility will follow.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 144: ASSESSMENT OF PAIN AND MANAGEMENT MODALITIES IN PATIENTS UNDERGOING HEMODIALYSIS AT A TERTIARY CARE HOSPITAL IN INDIA: A PILOT STUDY

Shalini Saini 1, Dhawal Arora 1, Veena Asthana 1, Shahbaz Ahmed 1

Introduction: India is one of the most populous countries of the world, which has an ever increasing burden of chronic kidney disease (CKD) patients. The prevalence of pain has been reported to be >60–70% among patients with advanced and end-stage kidney disease. Underlying etiology of pain varies, but poor pain relief is associated with poor quality of life. This pilot study is aimed at assessing the incidence of pain and pain management in patients undergoing dialysis and at a tertiary care hospital in a rural state in India.

Objective: To assess pain levels in patients undergoing hemodialysis. To report various drugs and techniques used for pain relief in these patients.

Methodology: It is a quantitative descriptive study. It includes a personal interview of patients who are undergoing dialysis using Brief Pain Inventory (BPI) and Visual Analog Scale (VAS). People who are in confused state or in coma, and inability to communicate in the spoken language will be excluded.

Results: This is an ongoing study and till now, we have enrolled 10 patients. Out of them, 6 were male and 4 were females. Average VAS reported was 6/10 (60%). Most common site of pain was legs (n = 4). The most common pain management modality included combination of tramadol and paracetamol, with only 50% relief. We aim at including around 50 patients.

Conclusion: Very little is being done to improve their quality of life. It is essential to individualize pain evaluation and provide further education to family members to improve the quality of life of these patients.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 145: NURSE LED CLINICS IN PALLIATIVE CARE

Anu Savio Thelly 1

A nurse-led clinic is any outpatient clinic that is run or managed by registered nurses, usually nurse practitioners or Clinical Nurse Specialists. Clinics at the hospice have been largely medically-led with patients attending on an ad-hoc basis with eligibility restricted to existing patients. Needs and problems of patients requiring palliative care is very complex. Here the nurses manage patients with complex palliative care needs. In MGMCRI, Pondicherry, the outpatient clinic is managed by one Nurse Consultant, whose role involves: As nurses, we are focused on the outcomes of our practice, such as the ability of palliative care to reduce pain and symptoms. In the current environment of healthcare, however, the impact of nursing care on health system outcomes, such as hospital readmissions, is also critically important.

  • Providing an initial consultation to give in depth clinical assessment of patients with specialist palliative care needs

  • Reviewing patients referred through telephone

  • Carrying out joint reviews with other members of the MDT.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 146: ROLE OF GYNAECOLOGY ONCOLOGY SPECIALIST NURSES IN IMPROVING PATIENT FOLLOW UP AND INTEGRATION WITH THE HEALTH CARE TEAM

Supriya Mondal 1, Barnali Ghosh 1, Shrikant Atreya 1, Jaydip Bhaumik 1, Asima Mukhopadhyay 1

Background: All advanced gynaecological cancers treated initially with a curative intent should also be referred to palliative care at the outset for symptom management. Specialist nurses can play an integral role in this process as patients feel more comfortable to relay their symptoms to nurses rather than busy clinicians. The concept of specialist nurses has been introduced in June 2016 in the Gynaecological Oncology department in Tata Medical Center. We aim evaluate our services through this prospective audit.

Objectives: To assess whether pre and post-treatment counselling and follow up by gynaecological oncology specialist nurses lead to better patient care in the following areas:

  1. Increased patient participation in self reporting of PROM (patient reported outcome monitoring) and uptake of follow-up methods via email, telephone etc

  2. Co-ordinate administration of intra peritoneal chemotherapy and follow up

  3. Detection of post treatment complications and symptoms by telephonic follow-up and co-ordination with the treating team including quality of life data collection

  4. Communicating MDT decisions to patients and arrange appropriate follow up

  5. Reduction of patient follow up appointments and distress by co-ordinating with other departments i.e., palliative care team and gynae/medical oncology at same visit

  6. Develop patient information leaflets and providing pre-operative education.

Methods: Prospective audit for service evaluation. Patients follow-up was done by face to face, telephone, email in the pre and post operative period, during chemotherapy and follow up visits by 4 specialist nurses.

Results: Between June 2016 and December 2017, specialist nurses conducted follow up of 225 patients both in pre-operative and post operative period and collected 30 day morbidity data. Pre-operative health education was given to all. 36 patients were co-ordinated with palliative care team on same day with gynaecological visit to reduce harassment/repeat appointments. Post-chemotherapy follow up was done for 80 patients after each cycle of chemotherapy. Co-ordination for 19 intra peritoneal chemotherapy was done by nurses during a 9 month period. As a result of regular follow up visits, women were more comfortable in self reporting of symptoms to the nurse including sensitive issues like body image and sexuality even by non-face to face methods including telephone calls/emails and postal mails. This has led to early detection of recurrences in 4 women, participation in multi-centric national/international quality of life studies (SOCQER2/SOCQER IND) and successful organisation of survivorship programmes in Gynaecological Oncology.

Conclusion: Counselling, education and building up of interpersonal relationship with specialist nurses can improve patient participation, satisfaction and follow up in resource poor conditions. This can help in early detection of recurrences and integrated palliation of symptoms. The role of CNS is vital to the advancement of nursing practice.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 147: A DYNAMIC MODEL FROM DIFFERENT PERSPECTIVES FOR QUALITY ASSESSMENT OF PALLIATIVE CARE

Manish Chaturvedi 1, Vedpal Arya 1, Naresh Bhatnagar 1

Introduction: Palliative care works in close partnership with the main treatment of patient and is very crucial specially for the terminally ill cases. The strategy to manage total pain of patient encompasses a 360 degree holistic view including crucial aspects like managing physical, psychological, emotional spiritual, societal pain. While the available literature deals with a static perspective on the assessment of quality of palliative care, a need is there to acknowledge the changing scenario at various stages of treatment.

Objective: The current article proposes a dynamic model of assessment of quality of palliative care which adapts itself as per the stage of the treatment and implied need of a terminally ill patient.

Methods: Various tools for assessment of the quality of palliative care are available depending on the perspectives e.g. patient (CANHELP, QEOLC, QUEST, QPP), relatives (FAMCARE, VOICES, CES), specialist, regulatory bodies, various theoretical model of care quality, and resource structure of the care organization. The palliative care has different dimensions such as competence and attitude of the care giver, infrastructure and capabilities of the care giving organisation, illness level and preference of the patient and the sociocultural atmosphere. A dynamic model is developed which assess the most crucial perspective at the moment and applies appropriate assessment model at that time.

Results: The proposed model of quality assessment proves to be more effective as it adapts itself with the changing demand of the scenario.

Conclusions: The dynamic model will help in better assessment of the quality of palliative care and thus indicate possible improvement in the process.

Indian J Palliat Care. 2018 Apr-Jun;24(2):228–282.

PD 148: SHARED DECISION MAKING IN PALLIATIVE CARE IN CANCER PATIENTS

Vedpal Arya 1, Manish Chaturvedi 1, Deshmukh SG 1, Naresh Bhatnagar 1

Introduction: Need of ‘Patient centred personalized conversation’ has given rise to a multi disciplinary approach (palliative care) especially for people with serious illness e.g. cancer. Shared decision making through patient-physician interaction has an important role for getting the relevant information, its elicitation and validation.

Objective: The aim of this article is to disseminate the findings on the area of ‘shared decision making’ in the context of ‘palliative care’ in ‘cancer’ patients.

Methods: The literature was searched from ‘SCOPUS’ data base. Terms ‘Shared Decision Making’, ‘Palliative Care’ and ‘Cancer’ were searched and the related articles were screened to understand the current trend of research.

Results: SDM has been studied in various medical encounters but its literature concerning ‘palliative care’ in ‘cancer patients’ is scarce.

Conclusions: The research trend shows that the importance of SDM in palliative care is increasing at a faster pace from past half decade [Figure 1]. The interaction data (qualitative and quantitative) is now analyzed using data mining, identifying co-relations and predicting in order to develop promising strategies to provide effective care. Such assimilation of technology can result in reduced diagnostics testing, prescriptions, hospitalization and saving the precious resources in a broader sense.

Figure 1.

Figure 1

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Research trend in palliative care incorporating shared decision making

Keywords: Cancer; palliative care; shared decision making; technology

Articles from Indian Journal of Palliative Care are provided here courtesy of Scientific Scholar

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