FINANCIAL BURDEN AFTER HEMATOPOIETIC CELL TRANSPLANTATION
Rationale/Conceptual Basis/Background: HCT is a commonly used treatment modality for many hematological malignancies. Improved survival due to advancements in transplantation techniques along with the increasing number of transplants being performed worldwide have increased the number of HCT survivors, with an estimated number of survivors around 250,000 by the year 2015. HCT is an intensive, medically complicated and life-threatening therapy with a prolonged trajectory of recovery. Similar to financial issues in other cancer treatments, adverse financial consequences of HCT are emerging as an important issue, and may be associated with poor quality of life (QOL) and increased distress in HCT survivors. Often the need to relocate near a transplant center and exorbitant out of pocket costs contribute to financial burden and can lead to bankruptcy,
Methods: A 25-item questionnaire was mailed to 482 HCT recipients transplanted from 1/2006 to 6/2012 at Mayo Clinic to collect socioeconomic and financial burden information. The questionnaire included the following open-ended question: “How has transplant made an impact on your financial situation? Please let us know if any particular information could have been provided to you before the transplant that would have helped you plan your finances better for your post-transplant care”. The textual data obtained from this question from 46% of the 268 respondents (n=124) was used to understand the financial experiences of the patients. Textual data were analyzed with a constant comparative analysis obtained from the open-ended questions in the survey.
Results: 124 respondents provided a description about financial burden experiences after allogeneic HCT. Mean age was 50 years old and 44% of them were male. 43% of these patients had received their transplant for acute leukemia. 7 themes were emerged from HCT patient comments: (1) financial loss, (2) financial worry, (3) employment loss and transition, (4) healthcare and insurance barriers, (5) financial facilitators, (6) preparation for financial consequences of HCT, (7) impact on family/caregiver. Patients described specific concerns such as inadequate pre-HCT preparation for financial burden, caregiver stress, and the importance of support such as insurance and assistance from non-profit organizations. Some patients expressed worry about lifetime costs and loss of home or business.
Implications: Patients reported financial distress as a primary concern for HCT survivorship and identified barriers and supportive factors influencing their financial health. Healthcare providers need to be aware of these risks, and encourage survivors to be proactive in planning for their financial future, even amidst a life threatening crisis. Future research should focus on early identification of financial distress and develop interventions to improve both clinical and financial outcomes of HCT for patients.