Financial impact of allogeneic hematopoietic cell transplantation on patients and families over 2 years: results from a multicenter pilot study

Abstract

Hematopoietic cell transplantation (HCT) is a procedure that can significantly influence the socioeconomic wellbeing of patients, caregivers and their families. Among 30 allogeneic HCT recipients and their caregivers enrolled on a pilot study evaluating the feasibility of studying financial impact of HCT, 16 agreed to participate in the long-term phase, completed a baseline questionnaire and received phone interviews at 6, 12, 18 and 24 months post-HCT. Analyses showed that by 2-years post-HCT, 54% of patients who previously contributed to household earnings had not returned to work and 80% of patients/caregivers reported transplant as having moderate to great impact on household income. However, patients’ level of confidence in their ability to meet household financial obligations increased from baseline to 2-years. A relatively large proportion of patients reported inability to pay for medical care through this time period. Case studies demonstrated patient individual perception of financial impact of HCT varies considerably, regardless of actual income. We demonstrate the feasibility of conducting a study to evaluate financial impact of allogeneic HCT through 2-years post-transplantation. Some patients/caregivers continue to experience significant long-term financial burden after this procedure. Our study lays the foundation for a larger evaluation of patient/caregiver financial burden associated with HCT.

Inability to work and need for disability pension among long-term survivors of hematopoietic stem cell transplantation

“…25 Survivors who were primary or secondary wage earners before transplantation may have a significant decrease in the household income if this income is restricted to social security. 10 In such a situation, additional out-of pocket expenses due to uncovered costs of long-term follow-up surveillance and management can increase financial toxicity. In this sense, the need for a disability pension can represent a measure of the risk of financial toxicity after HSCT.…”

“…Additionally, non-employment may have a significant financial impact on the household income, particularly when survivors were contributing as primary or secondary wage earners before transplantation. 9,10 In some cases, patients may need a work disability pension to ensure their minimal subsistence for life. 11 Repeated additional out-of pocket costs, which are common after HSCT further increase the financial burden for survivors.…”

National Institutes of Health Blood and Marrow Transplant Late Effects Initiative: The Healthcare Delivery Working Group Report

“…Financial toxicity has been defined as the subjective and objective financial hardship faced by patients and families during and after cancer treatment that can lead to significant morbidity among HCT survivors. 22, 23, 25, 37, 38 Financial toxicity can start at the time of diagnosis and during initial treatment and can continue and may persist or deepen during the survivorship phase, especially among patients with chronic GVHD. Tools to measure financial toxicity are being developed and the evaluation of these tools should be integrated into the research agenda.…”

Engaging Patients in Setting a Patient-Centered Outcomes Research Agenda in Hematopoietic Cell Transplantation

“…The literature provides information about initial post-HCT costs and types of costs [39–41], but little information exists about patient financial health going into HCT or about patient awareness of financial hardship they may face. In fact, one study found that pre-HCT, financial issues and work were the most frequent concerns after symptoms [42].…”

“…Available data generally provides descriptions of burden during the short term, within the first three months post-HCT [40, 44, 45]. Caregiver stress and burden has been associated with poorer patient quality of life, impaired patient outcomes, and loss of income including difficulties covering expenses for medical care [41,44, 46]. This suggests that more attention is needed to better understand and mitigate caregiver financial burden.…”