CONCEPT OF CHRONIC MEDICAL ILLNESSES
There is no specific or formal definition of chronic medical illnesses. Some of the authors have attempted to give an operational description of chronic medical conditions as conditions needing ongoing management over an extended period and include a broad range of conditions such as cardiac diseases, malignancies, endocrine/metabolic diseases, stroke, chronic hepatic diseases, chronic renal diseases, chronic respiratory diseases, certain infectious diseases, genetic disorders, and other health issues resulting in disability/impairment.[1] Chronic medical conditions are highly prevalent, especially among older adults, with many having more than one chronic ones. This has led to the development of the concept of multimorbidity, defined as multiple medical conditions in a single person.[2] Regarding several chronic states, some authors define multimorbidity as two or more, whereas others specify it as the presence of three or more chronic diseases.[3,4]
Some attempts have also been made to define the word chronic in the context of multimorbidity. It is understood as the presence of a permanent condition that is associated with irreversible pathological changes in the body organs and systems, requires long-term supervision, observation, and care, is associated with disability/impairment, and requires special training for the patient's rehabilitation.[3] Some authors define “chronic” as persistent medical conditions, which are of extended duration (often lifelong), with a higher probability of recurrence, and there is marked difficulty in ameliorating or curing them.[5] Some authors prefer to use the term long-term conditions instead of chronic and define these as conditions that cannot be cured but can be controlled with medications and other measures.[6]
In terms of prevalence, data from the United States suggest that about one-fourth of the people suffer from one or more chronic conditions, and the prevalence figures increase to 50% among those aged 45–65 years and go up to as high as 81% among those aged more than 65 years.[7] An available review of the literature of community-based studies reports the pooled prevalence of multimorbidity to be 33.1%, with a significantly higher prevalence in high-income countries (37.9%), than that in low- and middle-income countries (29.7%).[4] Data from India suggest that the prevalence of multimorbidity among older adults is 30.7%.[8] Some of the studies have attempted to evaluate the incidence of multimorbidity, and a study that assessed the 3-year incidence of multimorbidity (defined as the development of ≥2 chronic diseases) among those who had no chronic condition to start with reported an incidence rate of 33.6%. The incidence rate among those with one disease at the baseline was 66.4%, amounting to an incidence rate of 12.6 and 32.9/100 person-years for those without any condition and those with one illness at baseline, respectively.[9]
Irrespective of the etiology and the underlying pathological changes associated with specific chronic or long-term medical conditions, most persons suffering from these conditions go through similar experiences and challenges.[5] Nearly half of the persons with chronic illnesses report functional limitations and have poor self-reported health.[10] Additionally, many persons with chronic physical diseases experience mental health disorders (such as depression and anxiety), other mental health issues such as stress, loneliness, social isolation, etc., and social issues such as stigma, poverty, financial distress, unemployment, etc.
Because cure is not possible in chronic medical diseases or disorders, in recent times, emphasis has been on improving these patients' well-being and quality of life (QoL). In this regard, understanding these concepts, including the concept of health, is essential.
CONCEPT OF HEALTH AND HEALTH PROMOTION
Health should not be understood merely as the absence of disease. World Health Organization (WHO) defines health as “a state of complete physical, mental and social well-being, not merely the absence of disease”.[11] Health should be viewed as a tool that enables individuals to achieve their goals, meet their requirements, and adapt to their surroundings in order to have long, fulfilling lives. It enables a person to further their development in the social, economic, and personal domains essential for well-being. Health is influenced by personal, environmental, and social resources. Individual health resources include physical activity, healthy dietary habits, good social connections and social ties, resilience, positive emotions, and autonomy. The environmental and social resources influencing health include peace, economic security, a stable ecosystem, and safe housing. In this context, health promotion is understood as a process that enables a person to improve control over their life to improve their health. Health promotion activities aim to strengthen individual, environmental, and social resources that can finally enhance well-being.
CONCEPTUAL UNDERSTANDING OF WELL-BEING
The concept of well-being has been understood from different perspectives, and it is broadly understood as hedonic well-being (HWB) and eudaimonic well-being (EWB). The HWB, or subjective well-being, is an emotional and cognitive self-evaluation of life, and it consists of frequent pleasant feelings, infrequent unpleasant feelings, and overall judgment of whether life is satisfying. In contrast, EWB considers particular needs or qualities of paramount importance for one's psychological growth and development, and fulfilling these needs enables one to attain their full potential.[12] EWB is rooted in pursuing goals and activities consistent with one's values and identity.[12] Ryff[13] listed six key features that indicate that a person is functioning well. These include the maturity to be guided by internal standards (autonomy), the capability to trust and love others (positive relations), the ability to manage external stressors and leverage on opportunities (environmental mastery), having a positive attitude toward self (self-acceptance), having essential aims and goals in life (purpose in life), and accepting new challenges in life for personal growth.[13] Besides the conceptualization of well-being as HBW and EWB, other authors have included the concepts of optimism and flourishing (one such model is known as PERMA: positive emotion, engagement (flow), (positive) relationships, meaning, and achievement).[12]
Among the various concepts of well-being, HWB has received significant research attention. HWB comprise affective and cognitive component. A person is considered to have high affective well-being when their experience of pleasant feelings exceeds the unpleasant feelings. The assessment of affective well-being accordingly focuses on assessing various emotions, such as happiness, joy, sadness, contentment, anger, worry, etc., However, it is crucial to understand the importance of the frequency of affective well-being rather than the intensity of affective well-being because people who experience more intense positive emotions also experience more negative ones. On the other hand, those who experience a higher frequency of positive emotions experience lower negative emotions and resultantly have more positive emotions and possibly higher satisfaction. Cognitive well-being is the self-evaluation of own life compared to an ideal life. People with high cognitive well-being usually evaluate their life goals, desires, and standards to be primarily met in their current situation. Evaluating life satisfaction as part of cognitive well-being can also include satisfaction in specific areas of life, such as work, family, and health.[12] Generally, there is a positive correlation between affective and cognitive well-being, but both concepts are mutually exclusive. Regarding affective well-being, data suggest that negative or unpleasant emotions are associated with a higher risk of health issues such as coronary artery disease and poor immune functioning over the long run. On the other hand, higher pleasant emotions are associated with healthy behavior, better immune functioning, and faster recovery after a cardiac event.[12] Cognitive well-being reflects the person's judgment about one's life and satisfaction in specific domains of life. The evaluation is based on comparing one's current state with that of a desirable state of affairs. Accordingly, when the present circumstances exceed the desired state, a person has positive cognitive well-being, which could be global satisfaction or domain specific such as work, health, and relationships. Cognitive well-being is further understood to be determined by distal or proximal factors. Accordingly, this is described as a top-down or bottom-up model of cognitive well-being. According to the bottom-up model, life satisfaction is determined by evaluating satisfaction in various domains of life (such as work, relationships, and health) and cultural factors. As per the top-down model, personality traits determine life satisfaction, influencing domain-specific satisfaction.[12]
Research involving patients with various physical health conditions suggests that positive affect has a positive effect, whereas negative affect has a detrimental impact on the outcome of the health conditions.[12]
Relationship of health, illness, and well-being: WHO states that “well-being exists in two dimensions, subjective and objective. It consists of an individual's experience of their life as well as a comparison of life circumstances with social norms and values”.[14] Health, education, employment, interpersonal connections, built and natural surroundings, security, civic involvement and governance, housing, and work-life balance are all aspects of daily living that might affect well-being. Subjective experiences include overall well-being, psychological functioning, and affective states. Regarding health, it is crucial to understand that physical and mental health influence well-being and vice versa. However, it is essential to understand that mental illness and well-being are independent dimensions. People with mental disorders can have a high level of well-being, and it is also possible that those without mental disorders can also have a low level of well-being.[15] It is also suggested that good health is associated with high life satisfaction.[16] There is also support for the association of well-being with self-perceived health, longevity, healthy behaviors, mental and physical illnesses, social connectedness, productivity, and other factors in the physical and social environment.[17,18]
Recently, authors have attempted to define well-being as per the definition of health and describe three core components of well-being. These include physical well-being (i.e. a sense of pleasure derived from the fulfillment of physical needs and the comfort that one derives from the quality of bodily functioning and having a feeling that one has enough energy to meet their daily needs), mental well-being (this includes personal experience of happiness and having positive feelings of the fulfillment of the psychological needs), and social well-being (reflects persons positive social connections, a sense of harmony and integration into the society). Additionally, these authors suggest two additional domains of well-being in the form of spiritual well-being (that includes a sense of serenity and joy that one derives from the gratification of existential and spiritual needs) and general well-being (which is considered as a balance of the other four domains of well-being).[19]
Overall, well-being connects mental (mind) and physical (body) health and provides a holistic model for preventing diseases and promoting health [Table 1].
Table 1.
Basic facts about well-being and its relation to health
|
CONCEPT OF QUALITY OF LIFE
QoL emerged in the early 1970s, as a measure of wellness, in the context of diseases and disability. Over the years, the importance of the concept has increased, and the idea of QoL has been used in the context of evaluation of the performance of a country in different aspects, including healthcare, politics, and employment. The importance of the concept of QoL can be understood from the perspective that it is now considered that gross domestic production should not be regarded as the only parameter for evaluating a country as it does not provide information about a country's social progress. Accordingly, it is vital to understand the QoL. According to the European statistical system that considers QoL in the context of a country, QoL is determined by material living conditions (income, consumption, and material conditions), production, health, education, leisure, and social interactions, economic security and physical safety, governance and fundamental rights, natural and living environment, and overall experience of life.
The QoL specifically related to health is understood as HRQoL, that is, described in the context of a person. In the context of health, the concept of QoL has been used to monitor the performance of health services, evaluate the outcome of various interventions for health conditions, and indicate unmet needs.[20]
Regarding indicators of QoL, it is influenced by physical and mental health, environment, employment, wealth, education, recreation and leisure time, social belongingness, religious beliefs, safety, security, and freedom. Regarding various dimensions of QoL, according to the WHO Quality of Life (WHOQOL) group, the various dimensions of QoL include physical, psychological, independence, social relations, environmental, and spiritual. These dimensions can be further categorized into different facets (25 facets as per the WHOQOL group) that are reliable and valid across the globe.[21]
The concept of QoL in the context of health is understood as HRQoL. Some authors define HRQoL as a holistic emphasis on the patient's social, emotional, and physical well-being after treatment.[22] Others understand HRQoL as the impact of the person's health on their ability to lead a fulfilling life.[23] According to another definition, HRQoL is a person's subjective experience directly or indirectly related to health, disease, disability, and impairment.
Further, the authors clarify that people rate their HRQoL by comparing their experience and expectations.[24] It is further clarified that the previous experience influences our expectations during the illness. Accordingly, the authors suggest that the impact of any chronic illness on the QoL of a person can be reduced by helping them to adjust their expectations and adapt to the change or the new clinical status.[24] Hence, health promotion should focus on changing people's expectations.[24] Other authors refer to HRQoL as the patient's report of functioning and well-being in physical, mental, and social domains of life. Functioning is further clarified as physical functioning in self-care, role functioning (i.e. work- performance irrespective of payment status), and social functioning (interaction with family and friends). Accordingly, these authors consider HRQoL less subjective than well-being.[25] Other authors' descriptions of HRQoL, which is a crucial element of successful aging and includes life expectancy, life satisfaction, mental and psychological health, physical health, and functioning, concentrate on the various facets of a person's life that are impacted by health, disease, and its treatment.[26]
According to the Centre for Disease Control and Prevention, the HRQOL is influenced by individual and community factors. Perceptions of physical and mental health and its factors, such as health risks and conditions, functional status, social support, and socioeconomic position, are among the individual-level determinants of HRQOL. The resources, environments, situations, policies, and practices that affect a population's views of their health and functional status are included in the community-level determinants of HRQOL.[27]
MENTAL HEALTH ISSUES IN PATIENTS WITH PHYSICAL ILLNESSES
Mental health issues are widespread in patients with various chronic medical illnesses. These have been commonly studied in the form of stress, depression, anxiety, sleep disturbances, cognitive disturbances, and poor well-being. Other psychosocial issues identified in these patients include high out-of-pocket treatment costs, social isolation, loneliness, pain/discomfort, anger, hopelessness, and pain.[28] The prevalence of depression in various physical illnesses varies from 7 to 86%, depending on the assessment instruments, time of assessment, and type of physical illnesses.[29] The relationship between mental health issues and chronic physical diseases has been further studied to understand the impact of one on the other. It is now well-recognized that mental health issues contribute to the development of certain medical diseases. The presence of undiagnosed or untreated mental disorders also contributes to poor medication and treatment adherence and poor participation in rehabilitation. For example, studies involving patients with coronary heart disease (CHD) suggest that depression increases the risk of CHD by 30–80%.[30] Further, these studies indicate a dose–response relationship between depression and CAD. Data also suggests that the risk of CHD conferred by depressive symptoms is comparable to that of traditional risk factors, such as hypertension, smoking, diabetes mellitus, and dyslipidemia.[31] Depression has also been shown to increase all-cause mortality, cardiac mortality, and cardiovascular events.[30] The high level of comorbidity between cardiac illness and depression has been linked to biological factors, psychosocial factors, and behavioral factors.[32] There is ample evidence to suggest that mental disorders also influence the outcome of various physical health conditions.[33] In a review of the evidence, the authors reported that there is convincing evidence to suggest that the presence of mental disorders increases the risk of cardiovascular mortality (i.e., the presence of schizophrenia) and all-cause mortality (i.e., the presence of depressive disorder).[33] Further evidence is also suggests that the presence of mental disorders influences the outcome of decompensated liver cirrhosis (i.e., presence of alcohol use disorder), diabetes mellitus (i.e., presence of depressive disorders), cancer (i.e., presence of schizophrenia), major cardiac events (i.e., presence of depressive disorders), and renal failure (i.e., presence of depressive disorders). The evidence also suggests the association of cardiovascular mortality with bipolar disorder and anxiety disorders and all-cause mortality in patients with renal failure and depressive disorders.[33] Although evidence is weak, there is some evidence to suggest that mental disorders also influence the outcome of patients with stroke, tuberculosis, hepatitis-C, Parkinson's diseases, human immunodeficiency virus, various cancers (breast, lung), and hip fracture.[33] Chronic medical illnesses, especially terminal illnesses, are also associated with significant spiritual distress and express spiritual needs.
TREATMENT MODELS FOCUSING ON WELL-BEING AND QOL
Various treatment models have been proposed to provide holistic care to patients with physical illnesses with or without mental health issues to improve their well-being and QoL. Some of these models include the consultation liaison psychiatry, integrated care, and palliative care models.
CL Psychiatry Model: The consultation-liaison psychiatry (CLP) is understood as “a subspecialty of clinical psychiatry that includes clinical, teaching, and research activities of psychiatrists and allied mental health professionals in the non-psychiatric divisions of a general hospital.”.[34] The word consultation is understood as providing an expert opinion to another specialist regarding diagnosis and advice on managing a patient's mental state and behavioral disturbance. On the other hand, liaison refers to the connection between groups for effective collaboration.[34,35] Over the years, the subspecialty of consultation liaison has evolved, and different models of CLP have been proposed.[36] According to most of these models, the mental health professional's role is to carry out a thorough psychosocial assessment of the patient and provide pharmacological and nonpharmacological care as per the patient's needs.
Chronic Care Model (CCM): CCM differs from the reactive care model based primarily on managing acute events (especially in a hospital setting); CCM is a proactive approach that empowers the patient and the community. It is usually implemented in the primary care setting. It is based on the six key components, i.e. (1) utilizing the community resources (i.e. using community resources such as volunteer groups, self-help groups, etc.), to address the patient's needs, (2) healthcare organizations (i.e. having an organization with a culture and mechanisms that promote safe and high-quality care); (3) promoting self-care (enabling the patients in the process of care by promoting effective self-management strategies such as action plans, coping strategies, problem-solving, and follow-up, etc.), (4) having a professional team (a multidisciplinary team focusing planned management of patients with chronic illnesses), (5) decision support (i.e. promotion of care based on evidence and preferences of patients), and (6) development of computerized information systems (that can support record keeping, that can alert primary care teams to adhere to the guidelines and for providing feedback to the physicians, and to monitor the performance of the team and the system). Available data suggest that implementing CCM in many countries has contributed to improved quality of care, health outcomes, and reduced disparities (e.g. ethnicity, social status) too.[37]
Collaborative/Integrated Care Models: Collaborative and integrated care are often used interchangeably. At times authors have also described these as models of CLP. Integrated care is “the care that results from a practice team of primary care and behavioral health clinicians, working together with patients and families, using a systematic and cost-effective approach to provide patient-centered care for a defined populationt”.[38] The collaborative care model attempts to create a close working relationship between different treating team members, especially at the primary and secondary care level, to provide high-quality care to a patient and improve both mental and physical health outcomes.[39] In the literature, many collaborative care model types have been discussed. One of the approaches places a strong emphasis on “integrating” behavioral health issue detection and treatment into routine primary care. The second paradigm, known as “reverse integration,” focuses on treating comorbid chronic medical issues in patients seen in the behavioral health sector, with the goal of improving patient health outcomes. A third model involves the participation of medical and behavioral health professionals to address total health regardless of the setting. As per this model, behavioral and medical professionals are considered part of a unified network of clinicians.[40] Regardless of the model, a multidisciplinary team typically offers collaborative care, which may include case management or coordination, patient and provider education, systematic patient follow-up, application of guidelines and algorithms, psychological interventions, and patient-shared decision-making.[39] Some of the collaborative care models also propose to include multicomponent behavior change lifestyle interventions (such as exercise, diet, sleep, alcohol reduction, and smoking cessation interventions) to improve lifestyle risk factors for both physical and mental illness, use of adjunctive nutraceutical treatments (such as omega-3 fatty acids, select amino acids and vitamin compounds, along with potential use of plant medicines), and use of mind–body therapies (such as yoga, and mindfulness-based interventions). According to American Psychiatric Association, five essential features of the collaborative care model include patient-centered team care (providing care for both mental and physical health services in a familiar location), population-based care (proper tracking of the patients and involving the psychiatrists to provide case load-focused consultations), measurement-based treatment (evaluating the outcomes by using evidence-based tools), evidence-based care, and accountable care (i.e. the providers are accountable and reimbursed for the quality of care and clinical outcomes, rather than just based on the volume of care provided).[41]
Palliative Care Model: WHO defines palliative care as “an approach that improves the QoL of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual”.[42] According to another definition palliative care is “an integrated approach that promotes the QoL of patients and families who are confronted with the physical, psychosocial and spiritual problems associated with a life-threatening illness”.[43] It is further elaborated as a form of care that “affirms life and accepts death as a natural process without trying to delay the process and constitutes a global and holistic approach to the patients suffering from a physical, psychological, social and spiritual point of view; seeks the well-being and QoL of the patient, is centered on the needs of patients and their families, life and death, that should not be restricted to terminally ill and agonized patients and should be addressed by a multidisciplinary team”. It is critical to remember that palliative care is focused on the patient's requirements, not on the likelihood of recovery. Furthermore, it is crucial to understand that it can be given in conjunction with curative treatment and is appropriate for patients of any age and stage of a serious illness (regardless of the diagnosis and prognosis), and that it primarily focuses on relieving symptoms and stress associated with the illness.[44] Some clinicians believe that there are many similarities between psychiatry and palliative care. These clinicians consider psychiatry care as a form of palliative care because psychiatric treatments, especially those for severe mental disorders, are frequently focused on improving QoL, and many are not curative. Additionally, the fundamental competencies of both psychiatry and palliative care include comprehensive and careful communication about diagnosis, prognosis, symptom evaluation and management, carer need assessment, and referral for extra medical services. Furthermore, both professions require important behaviors including a caring attitude, empathy, and optimism. Additionally, there is an open discussion regarding the patient's discomfort and the best way to handle it.[44]
WELLNESS INTERVENTIONS
The primary goal of wellness interventions is to address the issues in the day-to-day management of the disease, improving the outcome and reducing the cost of management of chronic illnesses.[45] Wellness interventions are also often referred to as self-management. Some authors have attempted to distinguish the understanding of wellness interventions from health promotion interventions. These authors emphasize that health promotion interventions are not specific to any illness, and the approach is not motivated. In contrast, wellness interventions are considered to be motivated by the desire to avoid an illness or its consequences.[46] The commonly described wellness interventions in the literature include exercise, nutrition, stress management, and general health education. These interventions are carried out on an individual basis or group basis. Different studies evaluating the effectiveness of these interventions have been carried out.[47]
One of the crucial strategies of wellness interventions includes self-management, which incorporates all the wellness interventions. Self-care, self-regulation, patient education, and patient counselling are all terms that are frequently used interchangeably with the phrase “self-management.” However, it is crucial to remember that self-management goes beyond educating the patient about their chronic condition and giving them better information about it.[48]
Self-management is understood as the ability of the person to manage their symptoms, treatments, lifestyle changes, and the illness's psychosocial, cultural, and spiritual consequences. Self-management is a vital component of managing chronic illnesses and is the primary responsibility of the patient to care for themselves while suffering from a chronic illness. In this context, “self-management support” refers to the process by which people with chronic illnesses and their families are provided information and support to help them understand their crucial role in the management of chronic illness, make informed care decisions, and indulge in healthy behaviors.[49]
There are various tasks and processes involved in self-management. The tasks of self-management involve medical management of chronic illness, behavioral management, and emotional management. The core self-management processes include problem-solving, decision-making, resource utilization, partnerships with healthcare providers, and taking action.[48] The processes involved in self-management have been further expanded and include focusing on the illness needs, activating the resources, and living with the chronic illness.[48]
Self-management for chronic diseases has been enforced in many countries, and different self-management programs have been described in the literature. According to one such program, i.e. the Stanford Chronic Disease Self-Management Program, workshops are organized once a week for six weeks, each lasting for two and a half hours. The workshops are conducted in senior centers, libraries, churches, and hospitals, and persons with different chronic conditions attend these programs. Techniques to deal with issues like frustration, fatigue, pain, and isolation are some of the topics covered in the workshops, along with the value of exercise, proper medication use, how to effectively communicate with loved ones and carers, nutrition, and the assessment of novel treatments. Two trained workshop facilitators with chronic illnesses, one or both of whom are not medical professionals, lead the sessions.[37,50] Some of the other programs include a few more components as part of the self-management program, and the components can also vary depending on the type of chronic physical illness [Table 2]. Further, the content of the self-management programs is also influenced by the objective(s) of the program.[51]
Table 2.
Topics covered in self-management programs for chronic illnesses (CDC self-management program)
| Chronic illnesses | Diabetes Mellitus | Heart Diseases | Cancers | Epilepsy | Persons with disability | |
|---|---|---|---|---|---|---|
| Techniques to deal with problems such as frustration, fatigue, pain, and isolation | + | + | + | |||
| Techniques to deal with poor sleep, and living with uncertainty | + | |||||
| Physical exercise for maintaining and improving strength, flexibility, and endurance | + | + | + | + | + | |
| Intake of appropriate medications regularly as indicated | + | + | + | |||
| Effective communication with family, friends, and health professionals | + | + | + | + | ||
| Focusing on relationships | + | + | ||||
| Learning to cope with stress, depression, and other concerns | + | + | + | + | + | |
| Managing psychiatric morbidity like depression | + | + | + | + | ||
| Relaxation techniques including breathing exercises | + | + | ||||
| Healthy eating – type of food and food habits | + | + | + | + | + | |
| Making good and appropriate decisions related to health conditions | + | + | + | |||
| Evaluating new treatments | + | + | ||||
| Understanding the illness | + | + | + | + | + | |
| Checking blood sugars | + | |||||
| Reducing risk for other health conditions and complications | + | |||||
| Learning to cope with stress, depression, and other concerns | + | |||||
| Setting priorities | + | + | ||||
| Improving cognition | ||||||
| Talking to friends and family about your epilepsy | + | |||||
| Goal Setting | + | |||||
| Problem-solving | + | |||||
| Having a positive outlook | + | |||||
| Seeking information and advocacy | + | |||||
| Maintaining positive changes | + |
The success of the self-management program is influenced by the patients' relationships with their healthcare providers, friends, and community and family members. Available data suggest that a higher level of adherence to self-management and better control over the illness is seen in patients with chronic illnesses with a higher level of family support. Considering the importance of the family, family-centered self-management programs have also been evaluated.
Different self-management programs have been evaluated for physical illnesses such as diabetes mellitus, low back pain, arthritis, heart disease, lung disease, stroke, arthritis, or multiple chronic conditions.[48]
However, it is crucial to understand the facilitators and barriers to running a successful self-management program [Table 3].[52,53] These can help in designing a successful self-management program.
Table 3.
|
Facilitators
|
Organizational supports and strategies (healthcare system-level):
|
Healthcare provider strategies:
|
Patient-directed strategies used by healthcare providers:
|
|
Barriers to self-management
|
|
Psychotherapeutic interventions for improving self-care, wellness, and QoL
Different studies have evaluated the role of various psychotherapeutic techniques in improving self-care among patients with chronic medical conditions. Some of the studies have attempted to address the barriers to self-care by using techniques such as motivational interviewing and interventions aimed at enhancing self-efficacy. Interventions that focus on improving wellness and QoL include acceptance and commitment therapy and mindfulness-based meditation techniques.[54] Positive psychotherapeutic interventions have also been shown to have a positive influence on well-being and QoL.
Other interventions
Collaborative care has been shown to improve depression and QoL in patients with chronic physical illnesses.[54]
EFFECTIVENESS OF MANAGEMENT STRATEGIES FOR IMPROVING WELL-BEING AND QOL
The effectiveness of various wellness interventions and self-management programs has been assessed in different studies. Some evidence supports the beneficial role of wellness interventions such as exercise, nutrition, and stress management in improving the outcome of illnesses.[47] However, it is essential to note that most of these studies have been of small sample sizes and varied considerably in the duration of intervention and the outcome of the intervention being evaluated.[47] The different outcomes of interest in the various self-management intervention studies for chronic medical illnesses include health behaviors, health status, QoL, and utilization of healthcare services.[55]
Different reviews and metanalysis have evaluated the efficacy/effectiveness of self-management programs for various chronic illnesses. However, one of the crucial limitations of the available literature is heterogeneity in the content of the self-management programs being evaluated for different illnesses, including heterogeneity in the self-management interventions being evaluated for a specific disease, for example, diabetes mellitus. A recent metanalysis included 145 randomized controlled trials (n = 36,853) published between 2008 and 2019 that evaluated the self-management interventions for diabetes mellitus (type-2), heart failure, coronary artery disease, hypertension, asthma, and chronic obstructive pulmonary disorders showed that overall effect size for improved outcome was small (Hedges' g = 0.29; 95% CI = 0.25–0.33, P < 0.001) with statistically significant heterogeneity across trials (Q = 514.85, P < 0.001, I2 = 72.0%), with more than half (57.2%) of the trials considered to have a high risk of bias.[56]
A review that compared the outcome of self-management interventions with the usual standard care in primary care and attempted to identify the effective strategies that lead to improved clinical and humanistic outcomes. The commonly used self-management interventions used in different studies were imparting knowledge about the illness and/or its treatment (100%), encouraging to carry out the physical activity (47.4%), improving problem-solving and/or decision-making skills (47.4%), self-treatment through use of self-management or action plan (45.6%), active stimulation of symptom monitoring (43.9%), improving coping or stress management (43.9%), encouraging intake of a healthy diet (42.1%), improving medication adherence (36.8%), promoting use of other health services or support resources (22.8%), and promoting smoking cessation (22.8%).[57] According to the authors, at the primary care level, this requires an organized patient-provider dialogue. This should include a one-on-one conversation between the patient and the practitioner, continuing monitoring, and the distribution of self-help resources. The authors also suggested that interventions should be customized to the needs of the patient and can combine strategies to improve the patient's knowledge of the illness and the treatment, how to self-monitor the symptoms, encourage the development of a personalized action plan to deal with symptom exacerbations or worsening, improve psychological coping and stress management strategies, and improve responsibility in terms of medication adherence and lifestyle choices. Following up with patients, physicians may offer feedback based on their needs, should track their progress toward healthcare objectives they have established, or may work on improving their problem-solving and decision-making abilities.[57]
In recent times, telehealth has also been utilized for self-management interventions. In a literature review on tele-based self-management for chronic illnesses, authors found some support for telemonitoring with blood glucose feedback and educational and lifestyle interventions in improving glycemic control in patients with type-2 diabetes mellitus only. Similarly, telemonitoring and telephonic monitoring of patients with health failure was associated with lower mortality and hospitalization rates.[58]
Some studies have specifically focused on improving the self-efficacy of persons with chronic illness (es). A review of the literature suggested that the significant barriers to self-efficacy were health literacy (i.e. the degree to which an individual can obtain, communicate, process and understand basic health information and services to make appropriate health decisions), lack of access to health care (i.e. gaining access to a healthcare system, having access to the needed specialty services and having access to a provider who one can easily communicate with and trust), and support (from the health care provider, family, and friends). The essential strategies reported to improve self-efficacy include self-management programs, telehealth (access to health information transmitted via technology to support and promote health care from a remote location), mobile applications, gaming, and social media.[59]
Many studies have also evaluated the effectiveness/efficacy of the palliative care model in patients with chronic illnesses. The outcome measures of these studies have included the benefit of the palliative care intervention on the general and disease-specific QoL, level of control of psychological and physical symptoms, satisfaction with the care received, medical utilization, caregiver burden, and economic costs. As with studies on self-management, there is significant heterogeneity in the methodology of different studies. Data generally support the beneficial effects of palliative care on QoL and well-being.[60]
Studies have reported various positive psychotherapeutic or positive psychology measures to be useful in improving the well-being of patients with chronic physical illnesses.[61] Studies have also shown that utilizing mindfulness-based, spirituality-based, and religion-based interventions can help in improving well-being and managing depression in patients with chronic illnesses.[62]
There is a lot of data from India on the role of mindfulness-based interventions and yoga in the management of cardiac diseases, diabetes mellitus, and other chronic physical illnesses. The available systematic reviews suggest that mindfulness-based interventions are associated with a reduction in diastolic blood pressure in patients with noncommunicable diseases.[63] Mindfulness-based interventions in patients with cardiac disease have been shown to improve depression, anxiety, stress, blood pressure, and body mass index.[64]
Mindfulness-based interventions in patients with diabetes mellitus have been shown to improve biological (reduction in blood glucose levels, Hba1c levels, blood pressure, weight, body mass index, reduction in heart rate variability, better medication adherence and adherence to lifestyle measure, better acceptance of disease), psychological (reduction in depression, stress, worry, substance use; improvement in subjective health, eating behavior, self-esteem; more use of positive coping), and social (reduction in nonfunctional days, better physician-patient relationship, greater productivity, etc.) outcomes.[65] Yoga has also been associated with improvement in blood sugar in patients with diabetes mellitus.[66]
MANAGEMENT OF MENTAL DISORDERS IN PATIENTS WITH CHRONIC ILLNESSES
Assessment and management of various mental disorders in chronic physical illnesses is paramount. A detailed discussion of this is out of the scope of these guidelines, and the Clinical Practice Guidelines of the Indian Psychiatric Society of chronic illnesses involving various systems and organs have been published earlier. The readers can refer to them to manage a diagnosable psychiatric disorder in the presence of physical disease.
RECOMMENDATIONS FOR INCORPORATION OF WELLNESS INTERVENTIONS AND SELF-MANAGEMENT PROGRAMS FOR CHRONIC MEDICAL ILLNESSES
Most chronic physical illnesses are not curative and are associated with significant adverse social consequences for the patients and their family members. Due to all these consequences, it is now suggested that clinicians managing patients with various physical illnesses should not limit themselves to managing the signs and symptoms of the diseases but should also focus on providing holistic care and attempt to prevent the development of medical illnesses and their complications. Accordingly, while providing holistic care, addressing the person's needs is vital to improving the well-being and QoL.
Keeping this in mind, in the following section, we discuss the scheme of assessment for providing holistic care to patients with chronic illnesses, including those with comorbidities. This assessment and management should complement the pharmacological treatment for the primary illness. This assessment can be done in any setting. Although there are specific differences in the primary focus of assessment as per the palliative care model, collaborative care model, CLP model, and CCM, the basic principles have some overlap. The current recommendations are based on the principles of improving well-being and QoL. Ideally, the physician involved in managing the particular disease should be competent to carry out the assessment. If the mental health professional is part of the multidisciplinary team providing holistic care to the patients, then they should be involved in the assessment and management of the patient and the caregivers and should also be involved in training other professionals in carrying out detailed assessment and management. The assessment should take cultural factors into account.
The assessment should focus on psychological, social, spiritual, and biological domains [Table 4]. The assessment scheme should be similar for the patients and their family members involved in the care of the patient. The biological assessment should include understanding the type of physical illness (es), including complications. Assessment should also focus on the ongoing treatment, including the side effects and their impact on the patient's well-being and QoL. While focusing on the ongoing medications, it is important to focus on polypharmacy, use of medications that are not required, and duplicate medications. Whereever required, deprescription should be considered. Besides all these, it is also essential to assess the level of disability, impairment, and functioning of patients with chronic illnesses.
Table 4.
Assessment of patients with chronic illnesses to improve their mental health, well-being, and quality of life
Assessment of Patients
|
Assessment of caregiver issues:
|
The psychological assessment is crucial for managing patients with any physical illness(es). The psychological assessment should focus on screening for common mental disorders, predominantly depressive and anxiety disorders. If required, clinicians can take the help of various screening instruments to assess various psychiatric disorders and other psychological issues [Table 5]. While evaluating the psychiatric disorders, effort should also be made to understand the etiology of these conditions, i.e. whether these are related to the ongoing medications, are an outcome of distress/stress related to the illness or an outcome of the environmental situation arising due to the illness. Besides focusing on diagnosable psychiatric disorders, assessment should also focus on understanding the subsyndromal psychiatric symptoms and ongoing stress in the patient's life. Another important aspect of assessment is to identify grief in the patients, which may be related to disclosure of the diagnosis, relapse of symptoms, emergence of complications, or imminent death. The psychological assessment should also focus on understanding suicidality, substance use (current and past), and cognitive functioning. A good understanding of the patient's cognitive functioning may help in tailoring the amount of information to be provided in one go. It is often noted that many patients and their caregivers do not have adequate knowledge about the illness. Hence, the psychological assessment should also focus on understanding the knowledge about the illness of the patient and their family members. Other psychological factors that can influence the treatment include health/illness-related beliefs, as these involve help-seeking, following the advice of the health care professionals in terms of taking the medications, following advice about exercise and physical activities, seeking alternative treatments, and following the homemade remedies or advice given by clinicians from other pathies or by nonclinicians. The psychological assessment should also focus on other psychological issues such as well-being, loneliness, self-isolation, coping, QoL, and locus of control. Loneliness is defined as “the discrepancy between an individual's desired and achieved levels of social relationships.”.[67] Social isolation is recognized as an actual quantifiable shortfall in a person's social relationship that can be measured in the form of the size of the person's social network and the frequency of contacts.[68] The assessment of coping mechanisms should focus on evaluating the use of adaptive and maladaptive coping used by the person to deal with stress. An essential aspect of psychological assessment also includes understanding the locus of control, which is considered a personality trait. In the context of health, locus of control is understood as the extent of control people believe they possess over their health and the outcome of illness. The locus of control is generally described as an internal and external locus of control. People with a high internal locus of control believe that their actions influence their health-related outcomes and are more likely to comply with the advice for interventions such as exercise and nutrition. On the other hand, persons with a high external locus of control believe that rather than having control over their health outcome, it is influenced by other influential people, such as health care professionals, or other factors such as luck, chance, or fate.[69] Self-efficacy is a person's belief about their competence in successfully performing a given action. Self-efficacy influences the person's ability to manage the symptoms of chronic illness. It is also supposed to influence the initiation of self-care actions, the amount of effort made in the self-care actions, and the sustenance of the self-care management strategies when faced with obstacles and failures. It is generally believed that a high level of self-efficacy in dealing with chronic illnesses is reflected in a perceived ability to manage the chronic disease and a sense of control over life.[70]
Table 5.
Screening scales that health workers and physicians can use to screen for various mental disorders
| Variable | Scale |
|---|---|
| Stress |
|
| General Screening Questionnaires |
|
| Depression |
|
| Anxiety |
|
| Depression, anxiety (and stress scale) |
|
| Somatic symptoms |
|
| Cognitive functions |
|
| Substance use disorders |
|
| Suicidality |
|
| Well-being |
|
| Loneliness |
|
| Social-isolation |
|
| Self-efficacy |
|
| Locus of control |
|
| Quality of life |
|
| Spiritual well-being |
|
The assessment of social factors should include understanding the available social support from family, friends, and healthcare providers. It is essential to understand that, at times, based on the number of relatives available for care, a patient can have good social support, but this may not be true. The vital aspect of social support evaluation includes understanding the perceived social support by the patient. Another important social aspect of evaluation includes understanding access to specialist care. In an Indian setting, superspecialists are often available in big cities only. People from rural backgrounds may need better access to these specialists, and this lack of availability may cause distress and poor well-being. Depending on the illness, it may be necessary for some patients to understand the perceived stigma.
Spirituality is a fundamental element of human experience. It encompasses the individual's search for meaning and purpose in life and the experience of the transcendent. Spirituality is “a dynamic and intrinsic aspect of humanity through which persons seek ultimate meaning, purpose, and transcendence, and experience relationship to self, family, others, community, society, nature, and the significant or sacred.” It usually manifests through beliefs, values, traditions, and practices.[71] Many patients with chronic illnesses use spirituality as a method of coping with the illness. Spirituality also acts to reassess their lives and appreciate reality, despite the suffering. Many patients with chronic illnesses, especially those with terminal illnesses, often experience “spiritual distress,” which is understood as an “impaired ability to experience and integrate meaning and purpose in life through the individual's connectedness with self, others, art, music, literature, nature, or a power greater than oneself”.[72] Accordingly, spiritual care is understood as recognizing the spiritual needs of the patients and addressing them in a clinical context. Given this, assessing the spirituality of patients with chronic illnesses is essential. Different models have been proposed for the assessment of spirituality and spiritual distress [Table 6].
Table 6.
Models for assessment of spirituality
SPIRIT Model
|
FICA Model[73]
|
It should be remembered that the psychological, social, and spiritual assessment should not be limited to the patients only but should also be extended to the caregivers/family members involved in the patient's care. Additionally, the caregivers should also be assessed for issues like caregiver burden, psychological morbidity, caregiver distress, financial burden, anticipatory grief, adjustment to illness, caregiver abuse, self-neglect, expressed emotions, lack of sleep, and lack of time for self.
It is also important to note that assessment of issues that affect well-being and QoL should be an ongoing process and patients and caregivers should be assessed regularly for the same.
ROLE OF MENTAL HEALTH PROFESSIONS IN IMPROVING WELLNESS AND QOL OF PEOPLE WITH CHRONIC MEDICAL CONDITIONS
As mentioned earlier, mental health professionals may be directly involved in assessing and managing patients with chronic physical illnesses as part of a multidisciplinary team. Additionally, they are responsible for training other clinicians, nurses, and paramedical staff in recognizing patients' psychological, social, and spiritual issues and carrying out detailed biological, psychological, social, and spiritual assessments.
MANAGEMENT OF PSYCHOLOGICAL, SOCIAL, AND SPIRITUAL ISSUES TO IMPROVE WELL-BEING AND QOL
Health Education: One critical aspect of improving patients' well-being and QoL is providing adequate education to the patients and caregivers about the condition the patient is suffering. The health education can be provided as tailored patient education or encouraging patients to participate in the health education seminar on general topics or disease-specific seminars or discussions. It is now well-known that health education profoundly impacts the patient's knowledge about their medical condition and enhances their understanding of the consequences of carelessness about their health. It has also been shown that health education improves adherence to prescribed medications and makes long-lasting lifestyle and dietary pattern modifications [Table 7]. Together, these improve the patients' survival and QoL in the long run. Participation in health education seminars can also lead to improvement in social interaction among the sufferers, which may lead to a feeling that they are not alone who is suffering, can lead to the development of social networks among the patients, and provide an opportunity to learn from each other and share their experiences. These experiences can lead to a feeling of well-being and improve QoL. However, it is essential to understand that it may be, at times, challenging to travel specifically to participate in tailored health education discussions and health education seminars. The emergence of telemedicine services can fill this void significantly by carrying out online health education sessions.
Table 7.
Intervention to improve well-being and QoL
|
Health promotion: In chronic illnesses, health promotion is “efforts to create healthy lifestyles and a healthy environment to prevent secondary conditions, including teaching individuals to address their health care needs, increasing opportunities to participate in usual life activities and striving for optimal health. These secondary conditions may include the medical, social, emotional, mental, family, or community problems that an individual with a chronic or disabling condition is likely to experience”.[74] Health promotion involves communication with health professionals on matters related to health and making efforts to refrain from poor nutrition, poor physical activity, substance use (i.e. smoking, alcohol, and other substances), and social isolation because these factors not only contribute to the development of chronic illnesses but also harm the course of the chronic illness.[75] It also involves supporting the patients' efforts to achieve a healthy lifestyle. Health promotion is expected to enhance hope, reduce the negative consequences of chronic illnesses, and ensure that the effects of chronic disease do not influence the patient's lifestyle.
Self-management programs for chronic illnesses: It is one of the six core components of the CCM and is understood as the patients' day-to-day management of chronic illness during the disease. This involves proper medical management of chronic illness, behavioral management, and emotional management of the self. For a successful self-management program, having a good relationship with the healthcare provider, family, and friends is paramount. Clinicians across all specialties need to develop the self-management program and should implement these on a one-to-one basis or in a group format. In the Indian context, to create a self-management program, there is a need to establish a multidisciplinary team to address the self-management needs of the patients and their families. Besides the components being recommended in many Western countries, in the Indian context, the incorporation of yoga and meditation and mindfulness can be beneficial. Considering the patient load and the time constraint, teleservices can be used to run self-management programs whenever feasible.
Addressing mental health issues: Patients with chronic physical illnesses go through the different phases of disease (disclosure of diagnosis, adjustment to the diagnosis and treatment and their consequences, remission and relapse, terminal illness, etc.). Each stage of the disease brings in different mental health issues. The mental health issues can be syndromal or nonsyndromal. The primary physician managing patients with various chronic physical illnesses should be able to screen the patients for various common mental disorders and be aware of basic management principles of the same and when to refer to a psychiatrist. Clinicians can use different screening instruments to evaluate various mental disorders, including suicidality [Table 5]. It is to be remembered that this should be an ongoing process, and suicidality of any severity should not be taken lightly. Whenever a patient has a diagnosable mental illness, it should be treated adequately, as it is well known that undiagnosed and untreated mental conditions have a negative impact on the course and outcome of primary physical illnesses. While managing diagnosable mental illnesses with pharmacotherapy, clinicians must be aware of the drug–drug and drug–disease interaction to avoid further complications. The detailed management principles of mental disorders in various physical diseases have been discussed in the earlier clinical practice guidelines issued by the Indian Psychiatric Society.
Positive psychotherapy: It is now understood that remaining “positive” influences the outcome of various chronic illnesses. It has been shown that remaining positive or optimistic influences the inflammatory response and immunity. It is suggested that having an optimistic attitude also helps make lifestyle modifications pertaining to abstinence from smoking, a healthy diet, improving physical activity, and medication adherence.[76] Considering the importance of this, many positive psychotherapeutic interventions have been suggested to improve the adjustment of the person with chronic illnesses and improve the outcome. The commonly described positive psychotherapeutic interventions include acknowledging the positives in life, positive writing (i.e. three blessing exercise, gratitude letter, best positive selves, benefit finding, etc.), mindfulness and spiritual interventions, and acts of kindness and forgiveness can be utilized to improve the well-being of patients with chronic physical illnesses. Acknowledging the positive involves asking the patients to think about what positive is happening in their lives rather than focusing on the negatives. In the three blessings exercise, the patients are asked to pen down at least three good things that have happened in their lives in the last 24 h or weeks that have brought happiness to them. It is important to remember that these may not be big things in life, but they could include events like a neighbor saying hello to them. Practicing this often helps the patient to focus on the positives of life rather than just focusing on the negative aspects of life. The writing of a gratitude letter involves the expression of thankfulness to any person, whom the patient has never thanked before, but feels that they should be thankful to such a person because this person's act made them feel a positive way. Depending on the relationship and closeness, the patients may be asked to read these letters to the person. Alternatives to writing the gratitude letter could be making a phone call to the person. Available evidence suggests that expressing gratitude often helps reduce loneliness and health outcomes.[77] Patients can be encouraged to write selves exercise or save a diary, which involves asking the patient to note what kind of ideal person they want to be in the future. This may also include asking the person to write about possible positive outcomes after being diagnosed with a chronic illness. Other variants of positive writing include benefit finding, which involves writing about the benefits that would have resulted from the situation.[61,74]
Other acts that have been used include writing about the best future social relationships (help to improve social support and relationships). Researchers have also used performing three acts of kindness on a single day, which has been shown to improve the patient's mood. An alternative to this is performing pleasurable and meaningful actions, in which the patient is asked to complete three pleasurable acts in a single day. Out of these three acts, one can be done alone (for example, gardening), other can be done with others) (for example, going for a walk with a friend or relative), and one act that is meaningful or important (for example, maintaining the log of their health condition. Such acts can improve life satisfaction.[76] Other positive psychotherapeutic interventions include using strength (write about personal strength and choose one of them to use in the next week) and writing a forgiveness letter (involves writing a forgiveness letter to a person whose acts made you upset in the past).[74] Identifying character strengths consists of helping the patient identify their strengths that can be used for goal setting and then achieving them.[61]
Mindfulness-based interventions: Mindfulness-based stress reduction methods have been shown to impact the metacognitions about emotions positively and can make a person detached from the chronic illness and the consequent negative emotions. Mindfulness helps to develop a positive image of self rather than a negative one.[61] The mindfulness-based interventions can be guided or formal and informal. Formal mindfulness involves focusing on one's breath and then allowing oneself to focus on the present moment, accepting it as it is (rather than focusing on the emotions, thoughts, and the situation per se). Informal mindfulness involves thinking about one's daily routine and how one rushes through the same and then comparing it with a positive event. Yoga and meditation, as suggested by different schools, can also be used in patients with various chronic illnesses.
Spirituality-based interventions: There is an overlap between mindfulness-based interventions and interventions focusing on spirituality. Various spirituality-based interventions have been discussed in the literature. Spirituality-based interventions can involve focusing on an object considered sacred by the patient and then developing a spiritual connection with the qualities of preciousness, blessedness, or holiness.[76] This kind of intervention also involves “Om chanting”.
Religion-based interventions: Religion is considered to be part and parcel of most human beings' life. Religion is defined as “an organized system of beliefs, practices, rituals, and symbols designed to facilitate closeness to the sacred or transcendent”.[78,79] It expresses affiliations, beliefs, practices, and rituals.[78,79,80] All religions have specific beliefs about life after death and rules about conduct guiding life within a social group.[78,79] Religion is practiced either privately or in public in a group setting. The majority of people across the globe identify themselves with one or more religions. It can be said that religion plays an essential role in the life of many human beings. Studies suggest that religious and spiritual beliefs, thoughts, and practices (e.g. spiritual coping activities) can have both beneficial and deleterious effects on how people deal with their illness, psychosocial adjustment, mental and physical health, and treatment adherence.[81] Religion and spirituality also influence health behavior and mental health outcomes.[78,79] Religion-based interventions (religiously integrated cognitive behavioral therapy, listening to religious content and attending sermons, and reading pamphlets related to religion and spirituality) have been shown to reduce depression in patients with chronic illnesses.[62]
CONCLUSIONS
The management of chronic illnesses should not focus only on symptom amelioration and pharmacological management but should involve providing holistic care to improve the well-being and QoL. This may include engaging a multidisciplinary team from different specialties to enable the patient to practice various interventions to improve their well-being. One of the well-known strategies consists of a self-management program. All hospitals should attempt to develop this kind of program. Additional methods that have been shown to improve the health outcomes of patients with chronic illnesses include health education, health promotion, addressing mental health issues, and practicing positive psychotherapeutic interventions, including those focusing on spirituality.
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