Health-Related and Economic Burden Among Family Caregivers of Patients with Acute Myeloid Leukemia or Hematological Malignancies

Abstract

Introduction: Acute myeloid leukemia (AML) is associated with lower survival and greater unmet need compared with some other hematologic malignancies (HMs). Despite differences in acuteness between AML and other HMs, the burden of family caregivers (FCs) of patients with these malignancies offer similar patient experiences. A targeted literature review was conducted to explore FC burden of patients with AML and HM with and without hematopoietic stem cell transplant (HSCT). Instruments to measure and interventions to address FC burden were identified. Methods: Studies on economic burden and compromised health-related quality of life (HRQoL) associated with FC burden, family affairs, and childcare from 1 January 2010 to 30 June 2019 were identified through database and hand searches. Published English articles on randomized controlled trials or standardized qualitative or quantitative observational studies were included. FCs were those in close familial proximity to the patient (i.e., spouse, parents, children, relatives, other family members, significant others).Results: Seventy-one publications were identified (AML, n = 3; HM, n = 29; HSCT, n = 39). Predominant burden categories included humanistic (n = 33), economic (n = 17), and interventions (n = 22); one study was classified as humanistic and economic. FCs lack sufficient resources to manage stressors and experience negative psychological, behavioral, and physiological effects. FCs of patients with HMs reported post-traumatic stress disorder, significant sleep problems, moderate-to-poor HRQoL, and negative impacts on family relationships. Instruments designed to measure caregiver burden were generic and symptom-specific. Educational, expressional, and self-adjustment interventions were used to improve FC burden. Conclusion: Findings indicate a need for additional research, public health approaches to support FCs, and effective interventions to address FC burden. Minimizing FC burden and improving quality of life may reduce the overall healthcare service use and allow FCs to more effectively fulfill caregiver tasks. Support systems to alleviate caregiver burden may create

Decision‐making trade‐offs: A classic grounded theory study of Chinese acute leukaemia patients and their family caregivers across the trajectory of illness

“…Based on grounded theory methodology, this study explored the important cultural characteristics, concepts and paths of AL pa- Notably, this study provides a theoretical perspective for patients with other types of haematologic tumours and their families to face the challenges brought by the disease and solve the problems that may arise (Yucel et al, 2021). However, further research on different paths in patient decision-making is required, and continuous data collection and analysis are needed to further revise the theory, which is in line with the four characteristics of grounded theory.…”

Biobehavioral Implications of Covid-19 for Transplantation and Cellular Therapy Recipients

“…While the biological effects of Covid-19 on caregivers have not been specifically studied, stress-related dysregulation of the HPA axis has been observed among TCT caregivers and may be exacerbated by Covid-19 related stressors ( 170 , 180 , 181 , 189 , 192 , 193 ). Caregiver stress is also associated with enhanced expression of the proinflammatory CTRA gene profile ( 26 , 138 , 177 ).…”

Perspectives of caregivers of older adults with acute myeloid leukemia during initial hypomethylating agents and venetoclax chemotherapy

“…Caregivers of those with leukemia are particularly vulnerable to psychosocial distress [ 5 , 6 ]. Individuals with hematologic cancers and their caregivers describe a high prevalence of anxiety, depression, and financial burden [ 7 – 10 ]. Caregivers are often responsible for many tasks for the patient and home, including, but not limited to, psychosocial support, symptom management, medication management, and transportation.…”