Experiences and Preferences of Acute Leukemia Caregivers: A Qualitative Study

Introduction: Acute leukemia (AL) is a cancer of the white blood cells which progresses rapidly and aggressively. Caregivers of patients with AL and other hematologic malignancies face considerable humanistic and economic burdens, particularly related to financial strain, emotional distress and disruption of family relationships. Many caregivers report post-traumatic stress disorder, significant sleep problems, moderate-to-poor health-related quality of life, and negative impacts on the family (Yucel, Zhang and Panjabi, 2021). Obtaining a better understanding of the burden on caregivers of people with AL, as well as their views about AL treatment, can be useful for the development and appraisal of new treatments as it enables a more accurate representation of the burden of the disease.

Methods: The aim of this study was to gain a more detailed understanding of the perspectives and preferences of informal caregivers of people living with AL. We sought to explore greatest concerns regarding their burdens in providing informal care, caregiver's treatment priorities for the people that they provide care to, and the extent to which caregiver's concerns about the burden on themselves may relate to their treatment priorities. We conducted 60 semi-structured interviews with informal caregivers of adult AL patients (20 each in the UK and USA and 5 in each of France, Germany, Italy and Spain). Analysis of interviews was conducted using a thematic approach to identify key themes and insights.

Results: The burden and perspectives of caregivers of people with AL vary greatly depending on personal and clinical circumstances. The personal circumstances that led to variation included the age of the patient, the relationship to the patient, and the caregiver's employment status. The clinical circumstances included the type of treatment that the patient received, and their response to the treatment. Most interviewees reported some emotional, social, and financial/professional impacts. Some interviewees also reported an impact on their mental health. Interviewees often mentioned that the relationship with the person they care for has been strengthened by their experience of caregiving; however other familial and social relationships had sometimes deteriorated as a result of caregiving responsibilities, particularly when the person they care for was undergoing active treatment. When asked about preferences about features of new AL treatments, caregivers frequently mentioned wanting to avoid side effects that would impact the patient's dignity and self-esteem. Responses were mixed when asking if they would prefer a treatment that prioritizes length of life compared to a treatment that prioritizes quality of life. The majority of caregivers felt sufficiently informed and involved in treatment decisions. Some interviewees reported that they would consider the impact/burden on themselves when considering hypothetical future treatment decisions.

Conclusions: The level of burden across the caregivers was heterogenous, but most interviewees reported some emotional, social, and financial/professional impacts. Given the extent of the burden of AL on caregivers, the potential impact on caregivers should be considered alongside other factors when making treatment decisions.

No relevant conflicts of interest to declare.