Financial burden and recommended multilevel solutions among caregivers of pediatric hematopoietic stem cell transplant recipients

Abstract

BackgroundThe healthcare costs of patients who receive hematopoietic stem cell transplantation (HSCT) are substantial. At the same time, the increasing use of pediatric HSCT leaves more caregivers of pediatric HSCT recipients at risk for financial burden—an understudied area of research.MethodsFinancial burden experienced by caregivers of recipients who received autologous or allogeneic transplants was assessed using an explanatory mixed‐methods design including a one‐time survey and semi‐structured interviews. Financial burden was assessed through an adapted COmprehensive Score for financial Toxicity (COST) as well as questions about the types of out‐of‐pocket costs and cost‐coping behaviors. Chi‐squared or Fisher's exact tests were used to assess differences in costs incurred and coping behaviors by financial toxicity and financial toxicity by demographic factors. Interviews were audio recorded, transcribed, and analyzed using directed content analysis.ResultsOf 99 survey participants, 64% experienced high financial toxicity (COST 22). Caregivers with high financial toxicity were more likely to report costs related to transportation and diet. High financial toxicity was associated with nearly all cost‐coping behaviors (e.g., borrowed money). High financial toxicity was also associated with increased use of hospital financial support and transportation assistance. Qualitative analysis resulted in four categories that were integrated with quantitative findings: (1) care‐related out‐of‐pocket costs incurred, (2) cost‐coping behaviors, (3) financial support resources used, and (4) multilevel recommendations for reducing financial burden.ConclusionsConsidering the substantial, long‐term financial burden among pediatric HSCT patients and their caregivers, this population would benefit from adapted and tailored financial burden interventions.

A dyadic analysis of financial toxicity and health‐related quality of life among bone marrow transplant patients and their caregivers

“…Future OFN interventions may be a promising approach to addressing FT affecting dyads by helping manage finances, optimizing health insurance use, applying for financial assistance programs, and providing pre‐treatment cost estimates and access to transportation/food assistance 11–16 . Additional, potentially individually‐delivered interventions may be needed to address FT through educational programs (i.e.…”

“…14,15 Caregivers also report neglecting their own physical and mental health to cope with the financial burden related to their loved one's cancer treatment. 11 Despite this considerable caregiving burden, relatively few dyad-based studies have demonstrated the shared psychosocial experiences of hematologic patients and their caregivers, especially those undergoing BMTs. Even fewer assess the dyadic experiences of FT in this population.…”

“…[5][6][7][8][9] Informal cancer caregivers (e.g., unpaid family members and friends) play a critical role in providing care for their loved ones through intense and prolonged periods of treatment, hospitalization and recovery and often share in the patient's experience of FT of cancer. [10][11][12] Caregivers are especially vulnerable to experiencing FT when their financial circumstances are closely connected with those of the patient (i.e., spouse or parent). 13 Caregivers of hematologic cancer patients report taking time off work, quitting or changing jobs, loss of income and savings, borrowing money, and difficulty paying bills.…”

“…Reasons include higher out‐of‐pocket costs for hematologic cancer treatments that often entail bone marrow transplantations (BMTs), prolonged hospital stays and intensive follow‐up, and potential treatment related complications 5–9 . Informal cancer caregivers (e.g., unpaid family members and friends) play a critical role in providing care for their loved ones through intense and prolonged periods of treatment, hospitalization and recovery and often share in the patient's experience of FT of cancer 10–12 …”

“…Caregivers of hematologic cancer patients report taking time off work, quitting or changing jobs, loss of income and savings, borrowing money, and difficulty paying bills 14,15 . Caregivers also report neglecting their own physical and mental health to cope with the financial burden related to their loved one's cancer treatment 11 . Despite this considerable caregiving burden, relatively few dyad‐based studies have demonstrated the shared psychosocial experiences of hematologic patients and their caregivers, especially those undergoing BMTs.…”