Patient perspectives on living with chronic myeloid leukemia in India: Quality of life, psychosocial support, and stigma

INTRODUCTION

Chronic myeloid leukemia (CML) is a commonly encountered blood cancer caused by genetic mutations that affect the hematopoietic stem cells in the bone marrow.^[1,2] The prevalence of CML in India is approximated to be 5.47/100,000 individuals annually.^[3] Consequently, there has been a substantial rise in the incidence of CML, with projections suggesting a potential stabilization by the year 2050.^[4] CML was previously considered fatal, but now, there is renewed hope for longer life expectancy and advanced techniques to evaluate this extended longevity.^[5] This shift will have a significant effect on the patient’s quality of life, as well as their emotional and cognitive perception of the illness.^[5] The life expectancy of patients with CML has substantially improved since the introduction of tyrosine kinase inhibitors (TKIs) in recent decades.^[6] TKIs represent the established treatment protocol for recently diagnosed chronic CML patients across all stages of the disease.^[7]

Frequently encountered side effects from TKI treatment were diverse, encompassing both physical and psychological manifestations. Physical symptoms often comprised nausea, vomiting, pain, skin issues, and fatigue. Both medication and the disease itself were noted to disrupt daily routines, usual activities, and treatment adherence. Psychological impacts included feelings of low mood, increased attentiveness to general health, and changes in self-perception, marked by reduced confidence and the shift from being seen as an individual to being identified primarily as a patient.^[8] Although patients diagnosed with CML have access to effective treatments to manage their condition, many still struggle to maintain a typical quality of life due to the negative impact of prolonged treatment on their overall well-being.^[9]

In light of these considerations, this review focuses on understanding the experiences of individuals living with CML in India. It delves into various aspects such as their quality of life, the support they receive, both emotionally and socially, and the stigma they might face due to their condition. Living with CML can significantly affect patients’ emotions and overall well-being. The constant management of symptoms, side effects of treatment, and uncertainty about the disease’s progression can lead to anxiety, depression, and decreased quality of life.

By examining these perspectives, this review helps to gain insight into the challenges faced by CML patients in India and identify areas for improvement in healthcare services and support systems.

UNDERSTANDING CML

QUALITY OF LIFE IN CML PATIENTS

Quality of life among patients with CML may be affected in various ways: some might lose motivation and stop their treatment, others might doubt the benefits of completing their treatment, and some may become disheartened by the side effects they experience.^[15] CML presents a multitude of symptoms and treatment side effects that can disrupt daily functioning and well-being. All treatments employed for the prolonged treatment of patients with CML come with inherent side effects.^[9] While treatment side effects are typically mild, most patients face many years or even a lifetime of treatment. Consequently, side effects such as fatigue, skin rashes, fluid retention, bone pain, and persistent diarrhea can significantly impair the quality of life.^[16]

Factors influencing the quality of life in CML patients

Patients diagnosed with CML face a diminished quality of life.^[17] Several factors can influence the quality of life in CML patients [Figure 1].

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Figure 1:

Factors influencing quality of life in chronic myeloid leukemia patients.

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Symptoms

Patients with CML might exhibit constitutional symptoms such as fatigue, weight loss, and nocturnal sweating.^[7] The primary factor constraining the health-related quality of life for CML patients undergoing long-term imatinib therapy is chronic fatigue.^[18]

Treatment side effects

Patients with CML undergoing treatment with TKIs often report a lower quality of life compared to healthy patients.^[19] Patients treated with TKI experience side effects that not only affect the quality of life in patients with CML but also interfere with their daily activities.^[20]

Emotional and psychological impact

Patients diagnosed with CML may experience emotional and psychosocial challenges, which can arise both soon after receiving the diagnosis and persist over a prolonged period.^[21]

Financial burden

The expenses linked to managing CML, as well as the out-of-pocket costs connected to cancer treatment, can expose CML patients to financial strain, known as financial toxicity.^[22] Patients with CML face significant financial strain in the later stages of treatment, extending beyond the expenses of targeted therapy. This financial burden is largely due to hospitalization costs, indicating a notable presence of additional health conditions among these patients.^[23]

Social support

Support from family, friends, and loved ones is associated with improved psychological health in CML patients undergoing lifelong targeted therapies.^[24] Enhanced social support was independently associated with lower levels of anxiety and depression, alongside elevated positive well-being, self-management, and vitality.^[24] Therefore, enhancing social support networks can assist CML patients in effectively managing their condition.^[25]

Treatment adherence

Increased treatment limitations and the resulting challenges could impact adherence to TKIs. Opting for a CML treatment plan that is uncomplicated and easily incorporated into patients’ daily lives could significantly influence both their quality of life and adherence.^[26]

PSYCHOSOCIAL SUPPORT FOR CML PATIENTS IN INDIA

Psychosocial behavioral interventions offer a multifaceted approach to improve the well-being of patients with chronic conditions. By effectively managing lifestyle factors and stress, providing vital social support, and imparting education on various skills, these interventions hold promise in enhancing both mental and physical health outcomes.^[28] Research indicates that a higher perceived level of social support is linked to numerous positive psychological outcomes, such as decreased anxiety and depression levels, heightened positive well-being, improved self-control, and increased vitality.^[24]

Moreover, patients diagnosed with chronic hematological cancers commonly express supportive care needs, particularly concerning the acquisition of information and addressing psychological concerns.^[29] This highlights the importance of understanding the experiences of patients, particularly those with CML, to inform better support strategies for healthcare professionals (HCPs), caregivers, and families.^[21]

The HCPs can assist patients during the initial phases of crisis and hope by offering assistance, knowledge, and comfort. As patients transition into the adaptation and establishment of a new normal, HCPs can guide them in understanding and managing the potential advantages and drawbacks of ongoing medication and disease monitoring while also encouraging them to adhere to their treatment plan.^[21] Furthermore, family support is essential for managing CML at home and is positively associated with the psychological well-being of patients undergoing lifelong targeted therapies.^[25]

Self-care holds paramount importance for cancer survivors, as it directly correlates with their health and quality of life. Cultural influences play a significant role in shaping both self-care practices and the factors affecting them, such as confidence levels, daily routines, motivation, social support, and the dynamics between patients and caregivers.^[30] These factors influence the patient’s emotional reaction to the illness and their health-related actions concerning both prevention and treatment.^[31]

Ultimately, these findings underscore the importance of a holistic approach, integrating psychosocial and familial support, in addressing the multifaceted needs of patients living with CML.

BATTLING STIGMA

Negative attitudes, stereotypes, and discriminatory behaviors toward patients diagnosed with cancer are widespread in various societies.^[32] Patients may experience avoidance from others after being diagnosed with cancer, and the fear of being stigmatized can prevent them from disclosing their diagnosis.^[33] This stigma is linked to increased stress associated with the illness, with numerous potential consequences.^[32] Patients who are more attuned to the stigma associated with their cancer diagnosis may experience a more significant challenge to their sense of self compared to those who are less aware or sensitive to it.^[34]

The stigma toward mental illness and certain cancers can cause patients to feel guilty and ashamed, potentially worsening the onset of depression.^[35] Cancer-related stigma is associated with various negative impacts across different patient groups, including diminished self-esteem, increased anxiety and depression, decreased treatment adherence, delayed medical seeking, social isolation, housing limitations, employment obstacles, social exclusion, inadequate social support, and reduced quality of life.^[32]

To cope with the stigma, cancer patients employ various strategies. Adaptive mechanisms, such as cognitive reframing, acceptance, drawing on religious beliefs, and disregarding negative remarks, serve to mitigate the impact of stigma on psychological well-being.^[33] Conversely, some individuals resort to maladaptive coping methods, including withholding their diagnosis and avoiding discussions related to cancer, which may perpetuate feelings of isolation and hinder effective management of their condition.^[33]

ADDRESSING PATIENT NEEDS: RECOMMENDATIONS AND SOLUTIONS

Improving overall outcomes in cancer care requires patient-centered strategies that prioritize the needs of the patients.^[36] Patient-centered care is crucial in cancer treatment due to the increasing number of probabilistic decisions, which can lead to ambiguity and uncertainty for both doctors and patients. In addition, many cancer patients experience anxiety and distress when confronting their diagnosis and the available healthcare options.^[37] By shifting the focus of CML care toward a patient-centered model, it can encourage patients to take a more active role in monitoring and managing their intake of TKIs. This change is expected to lead to better health outcomes and greater participation from patients in their own care journey.^[38]

Unmet needs in hematological cancer survivor care can arise when patient support does not match the services provided. Identifying these needs, addressing them within appropriate timeframes, and utilizing strategies like peer support gatherings can enhance care models.^[37] Several survivors suggested that non-profit organizations could offer additional guidance and peer support gatherings to enable survivors to access more advice regarding their care, connect with others who share similar experiences, combat feelings of isolation, and foster a sense of belonging. Survivors emphasized the importance of these sessions being conducted in-person, regularly, and in various locations to ensure optimal attendance for both survivors and their support networks.^[37]

Advocacy is essential in cancer control planning and is vital in any resource context to impact policy and enhance the implementation of cancer control measures.^[39] Individuals affected by cancer, including patients, survivors, and those who care for them, possess valuable perspectives on identifying deficiencies in healthcare systems. By enhancing their capabilities, their experiences serve as influential resources for promoting enhancements in knowledge, practice, policy, and services.^[39]

CONCLUSION

Patients with CML in India confront significant obstacles in accessing health care and managing the burdens of the disease. Treatment side effects, stigma, and limited social support affect their quality of life. Patient-centered care, psychosocial support enhancement, and advocacy efforts are crucial to address these challenges. By prioritizing patient needs and fostering supportive networks, healthcare systems can improve outcomes for CML patients, ensuring better management of their condition and enhancing their overall well-being.