Abstract
Introduction
Haematological malignancies (HM) comprise of nearly 10% of all cancers. In oncology, the Health- related quality of life (HRQOL) measure assesses the physical, social and mental health aspects of patients undergoing treatment. There is lack of Indian data on HRQOL in patients with haematological malignancies. The main objective of our study was to assess the parameters of quality of life in adult patients undergoing therapy for haematological malignancies.
Materials and methods
We conducted a cross-sectional study between 1st March 2023 and 31st July, 2023. Patients included for the study were newly diagnosed patients aged ≥ 18 years with haematological malignancy- (lymphoma, leukemia, and multiple myeloma) and undergoing therapy. Patients with relapsed/refractory disease, palliative care and those on follow up or observation were excluded. The primary objective of our study was to explore the parameters of quality of life in adult patients undergoing therapy for haematological malignancies. The secondary objective was to identify factors which are most influential in affecting the quality of life (QoL) in these subset of patients. European Organisation for Research and Treatment of Cancer (EORTC) QoL questionnaire (QLQ C 30 version 3.0) was used for QoL analysis.
Results
A total of 130 patients were eligible for evaluation. The median age of patients was 55 years (Range- 18–78 years). The proportion of males was 1.6:1. The total mean global health status score including health and QoL was 73.5 ± 24.4. On comparison with EORTC reference score for all cancer patients, the global health status functional scale in our study was higher. The highest symptom score was observed for fatigue (40.1 ± 26.1) and lowest for diarrhoea being 5.7 ± 14.7. A similar trend in the symptom scales was seen in the EORTC cohort When age groups were compared, means for global health and physical functioning score had statistically significant difference. Amongst symptom scales, fatigue scores were higher as the ages progressed.
Conclusion
Assessment of QoL in patients with haematological malignancies should be integrated into clinical practice, to understand treatment related morbidity and thereby helping in choosing optimal treatment strategy.
Supplementary Information
The online version contains supplementary material available at 10.1007/s12288-024-01829-4.
Keywords: Health Related Quality of life, Hematological Malignancy, EORTC
Introduction
Haematological malignancies (HM) comprise of nearly 10% of all cancers. These include, Hodgkin’s disease, non-Hodgkin lymphoma, leukemias and multiple myeloma. In oncology, the Health- related quality of life (HRQOL) measure assesses the physical, social and mental health aspects of patients undergoing treatment [1]. This is greatly influenced by the patient’s perceptions, beliefs and experiences. In HM, this measure is particularly important because the therapeutic interventions have survival benefits along with significant toxicities. The QOL assessment captures a broadened definition of health beyond morbidity and mortality [2–4]. QOL is an important aspect of survivorship and is often neglected. To provide best management strategies, we need to understand how the treatment affects the QOL in these patients. Most of the published studies from India on QOL are those involving solid malignancies [5–8]. Till date, there are very few studies on assessment of quality of life in patients with hematologic malignancies from India [9–11].
The European Organization for Research and Treatment of Cancer (EORTC) has developed a set of questionnaires to evaluate the HRQOL in patients with different cancers enrolled in clinical trials. Various questionnaires are available for evaluation of QOL. The same questionnaire has been used in Indian patients with different solid tumors like breast and lung [12, 13] and myeloma [9, 10]. Through this study, we aim to assess the quality of life in patients with haematological malignancies in Western part of India and determine key factors influencing the same. This study will help us understand the quality of life in such patients.
Materials and methods
We conducted a cross-sectional study in the outpatient department (OPD) setup between 1st March 2023 and 31st July, 2023. Patients included for the study were treatment naïve patients aged ≥ 18 years with haematological malignancy- (lymphoma, leukemia, and multiple myeloma) and undergoing therapy. Patients with relapsed/refractory disease, palliative care and those on follow up or observation were excluded.
The study was approved by Institutional Ethics Committee (IEC/2023/4318). The participants were explained the purpose of the study in detail before taking consent. The participation was voluntary and patient confidentiality was maintained. The primary objective of our study was to assess the parameters of quality of life in adult patients undergoing therapy for haematological malignancies. The secondary objective was to identify factors which are most influential in affecting the QOL in these subset of patients.
Data collection
Patient’s demographic details such as age, gender, disease diagnosis, date of diagnosis, stage, performance status, treatment details, response to treatment and co-morbidities were recorded in a pre-designed proforma.
Quality of life (QoL): European Organisation for Research and Treatment of Cancer (EORTC) QoL questionnaire (QLQ C 30 version 3.0) was used [14]. This questionnaire incorporates nine multi-item scales. There are five functional scales (physical, psychological, role, cognitive and social), three symptom scales (fatigue, pain, nausea and vomiting) and one global health status/QoL scale. Six single item scales to assess certain individual symptoms (Dyspnoea, insomnia, loss of appetite, constipation, diarrhea and financial difficulties. This questionnaire has been validated and translated into 110 languages and has been used in more than 3000 studies worldwide [14]. It was an interview-based questionnaire. Prior permission to use the Hindi version was taken before starting the study. The interview was conducted by the doctor evaluating the patient in OPD.
Calculating scores and interpretation: Scale scores were calculated by transforming the average scores linearly (0-100). A high score for functional scales was indicative of better QOL, whereas a high score for symptom scale indicated high level of symptomatology and poor QOL [15].
Statistical Analysis
For QOL assessment, EORTC-QOL proforma was used to compare the QoL score of patients in all stages. Descriptive analysis of QOL score of all 30 items from QLQ C 30 was done using means and SD. The categorical factors such as baseline and treatment characteristics were analysed as frequency and percentage and continuous variables as mean/median and SD/IQR. A p value of ≤ 0.05 was considered as significant. SPSS version 23.0 was used for analysis.
Results
Patient and baseline characteristics
A total of 130 patients were eligible for evaluation. The median age of patients was 55 years (Range- 18–78 years). The proportion of males was 1.6:1. The varied diagnosis of the patients were- non hodgkin lymphoma, hodgkin lymphoma, acute myeloid leukemia, acute lymphoblastic leukemia, chronic myeloid leukemia, and multiple myeloma. The baseline characteristics have been represented in Table 1.
Table 1.
Patient characteristics
| Parameter | N/Median | %/Range |
|---|---|---|
| Total patients | 130 | |
| M/F | 81/49 | |
|
Age (Years) 19–40 40–50 50–60 > 60 |
55 years 33 19 26 52 |
18–78 years 25% 15% 20% 40% |
| Diagnosis | ||
|
ALL AML NHL HL CMPD MM CLPD |
9 16 29 12 15 25 24 |
7% 12% 22% 9% 12% 19% 18% |
| Unemployed | 64 | 49% |
| Income | ||
|
Rs < 50,000 Rs > 50,000 |
99 31 |
76% 24% |
| Illiterate | 76 | 58% |
| Type of treatment | ||
|
Chemotherapy Chemoradiotherapy |
113 17 |
87% 13% |
Quality of life analysis
QLQC30: The scores for all domains ranged from 0 to 100. The total mean global health status score including health and QoL was 73.5 ± 24.4. On comparison with EORTC reference score for all cancer patients, the global health status functional scale in our study was higher. The highest symptom score was observed for fatigue (40.1 ± 26.1) and lowest for diarrhoea being 5.7 ± 14.7. A similar trend in the symptom scales was seen in the EORTC cohort (Table 2).
Table 2.
Comparison of scores with reference range
| Parameter | Current study (Mean ± SD) |
Reference cohort (Mean ± SD) |
|---|---|---|
| Global Health | 73.5 ± 24.4 | 61.3 ± 24.2 |
| Physical Functioning | 69.8 ± 28.6 | 76.7 ± 23.2 |
| Role functioning | 75.8 ± 30.9 | 70.5 ± 32.8 |
| Emotional functioning | 76 ± 25.1 | 71.4 ± 24.2 |
| Cognitive functioning | 80.7 ± 23.8 | 82.8 ± 21.9 |
| Social functioning | 86.8 ± 22.2 | 75 ± 29.1 |
| Fatigue | 40 ± 26.1 | 34.8 ± 27.8 |
| Nausea/vomiting | 13.6 ± 22.2 | 9.1 ± 19 |
| Pain | 29.5 ± 29.1 | 27 ± 29.9 |
| Dysnea | 13.9 ± 25.1 | 21 ± 28.4 |
| Insomnia | 14.4 ± 26.5 | 28.9 ± 31.9 |
| Apetite loss | 28.2 ± 35.5 | 21.1 ± 31.3 |
| Constipation | 23.5 ± 31.1 | 17.5 ± 28.4 |
| Diarrhea | 5.7 ± 14.7 | 9 ± 20.3 |
| Financial difficulties | 17.8 ± 28.1 | 16.3 ± 28.1 |
Missing values- Since questionnaires for all the patients were assessed for completeness at the time of submission, the number of missing values were very low (< 2%). Majority of the patients required assistance in the questions on global health status.
Comparison of various groups
Disease groups were compared and the means for Role functioning had statistically significant difference (Table 3). When age groups were compared, means for global health and physical functioning score had statistically significant difference. Amongst symptom scales, fatigue scores were higher as the ages progressed (Table S1). No differences were observed in scores of males versus females. Univariate analysis did not show any significant factors affecting global health scores for quality of life (Table S2).
Table 3.
Comparison of means according to groups of disease
| Parameter | ‘Acute leukemias’ (n = 25) |
‘Lymphomas and myeloma’ (n = 66) |
‘Chronic leukemias’ (n = 39) |
P value |
|---|---|---|---|---|
| Global Health | 77.4 ± 27.6 | 71.2 ± 24.9 | 74.7 ± 21.6 | 0.537 |
| Physical Functioning | 66.1 ± 34.4 | 66.1 ± 28.1 | 78.6 ± 23.7 | 0.071 |
| Role functioning | 74.6 ± 34.7 | 69.7 ± 32.8 | 87.1 ± 21.4 | 0.019 |
| Emotional functioning | 72.3 ± 31.5 | 74.5 ± 23.1 | 80.9 ± 23.9 | 0.325 |
| Cognitive functioning | 78.0 ± 26.1 | 81.5 ± 22.4 | 81.2 ± 24.8 | 0.811 |
| Social functioning | 80 ± 26.3 | 85.8 ± 22.8 | 92.7 ± 16.5 | 0.072 |
| Fatigue | 37.8 ± 28.1 | 44.5 ± 27.5 | 34 ± 20.9 | 0.122 |
| Nausea/vomiting | 15.9 ± 26.5 | 17.4 ± 22.3 | 5.6 ± 16.8 | 0.024 |
| Pain | 24.3 ± 29.1 | 35.8 ± 29.1 | 22.2 ± 27.3 | 0.041 |
| Dysnea | 17.9 ± 31.8 | 14.6 ± 24.8 | 10.2 ± 20.4 | 0.465 |
| Insomnia | 14.6 ± 30.5 | 19.3 ± 28 | 5.9 ± 18.5 | 0.043 |
| Apetite loss | 33.3 ± 39.6 | 29.7 ± 35.6 | 22.2 ± 32.7 | 0.419 |
| Constipation | 23.9 ± 35.3 | 30.3 ± 33.4 | 11.9 ± 19.4 | 0.013 |
| Diarrhea | 6.6 ± 19.2 | 7.3 ± 15.5 | 2.5 ± 8.9 | 0.267 |
| Financial difficulties | 28.6 ± 38.9 | 16.7 ± 26.3 | 12.8 ± 21.1 | 0.079 |
Discussion
Haematological malignancies include, lymphomas, leukemias and multiple myeloma which comprise of 10% of all cancers [1]. There is evidence that HRQOL of HM patients is greatly affected in both short term and long term [16]. Difficulty with physical and psychosocial activity, living with uncertainty, worrying about future and relapse and impact on work life are evident in survivors of HM and bone marrow transplant. Goswami et al. conducted a meta-analysis of studies measuring QOL in patients afflicted with haematological malignancy. They concluded that patient-reported outcomes need to be incorporated into daily practice. They also suggested that clinical trials should include QOL assessment of all patients [17].
The number of studies reporting on QOL in HM are few. Questionnaires for QOL in these diseases are also limited [16]. A study by Esser P et al., reported on QOL outcomes in survivors post stem cell transplantation. They concluded that in these subset of patients, QOL in patients of haematological malignancies does not differ with the type of cancer, time since diagnosis and stem cell transplant [18]. Patients undergoing stem cell transplantation also have variable QOL owing to many factors such as development of Graft-versus- host disease, disease relapse etc. [19].
Comparison of cancer survivors with reference population is essential and this aspect has been taken into consideration by researchers [20]. Till date, there are relatively few such studies. Those that exist mostly focus on specific subsamples, e.g., survivors of a certain haematological cancer type [9–11, 16] or following SCT [18, 19]. There is no generalisability of the results in comparison to similar studies done on solid malignancies.
In our study, we assessed the HRQOL using the EORTC QLQ30 questionnaire in patients with haematological malignancy. The questionnaire was well accepted by the patients and the compliance was high. The number of missing values was low (< 2%). The time needed for completing both questionnaires (< 15 min in 95% of patients) is very acceptable and makes it feasible to use them in clinical studies. Approximately one-third (34%) of the patients needed help, often consisting of help to read the questions and in some cases, to understand the questions. Measurement of HRQOL by proxy was not performed, however, help of a bystander for recording the responses was acceptable.
Health-related QoL characterizes the perception of disease and treatment for a patient in terms of physical, emotional, cognitive and social domains of life. This helps the clinician understand the patients perception of the disease better and plan treatment accordingly. Cancer diagnosis alters the family functioning and imposes a financial strain on the family which might make the patient perceive a loss of family. However, at our institute treatment is free of cost due to ongoing government schemes. Financial difficulties were reported by relatively fewer patients.
The modest sample size is a limitation of this study. In our cohort of patients, fatigue was the most common symptom experienced. The global health scores were better than the EORTC cohort but due to a small sample size our results cannot be representative of a larger population. Functional scores were higher for younger patients and for patients with chronic leukemias. This is likely due to better performance status and chronicity of the disease respectively. Social and functional scores reported were higher due to better family structure and support available in India especially in lower middle income groups.
In North India, very few studies have been undertaken to focus on QoL concerns of cancer subjects. Poor infrastructure, illiteracy, poverty, and lack of proper treatment facilities at most centres often lead to poor survival outcomes, and hence focus has always been on achieving quantity of life rather than QOL. The lack of collection and reporting of HRQOL measures in haematological malignancies may be related to an underappreciation of their significance or that they are not required for drug approval. However, broader availability of HRQOL will enable patients to choose the best therapy for their treatment goals as well as their lifestyle.
Conclusion
Assessment of QoL in patients with haematological malignancies should be integrated into clinical practice, to understand treatment related morbidity and thereby helping in choosing optimal treatment strategy. Therefore, the results of our study are intended to inform and motivate healthcare workers and investigators for undertaking further analysis and outlining effective patient care plans to enhance QoL.
Electronic Supplementary Material
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Funding
Nil.
Declarations
Ethics approval
Approved by the Institutional Ethics Committee of AIIMS Jodhpur.
Conflict of interest
The authors have no conflicts of interest.
Footnotes
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