Prospective Assessment of Familial Financial Hardship after Hematopoietic Cell Transplantation

Background: Hematopoietic cell transplantation (HCT) is a resource-intensive therapy. The economic costs to the medical system have been well-described; however, few studies have prospectively assessed the financial consequences of HCT for patients and their families.

Methods: We report preliminary data from a prospective study of financial hardship related to HCT. We mailed a 41-item questionnaire to adult patients approximately six months post-allogeneic or autologous HCT at three sites (Dana-Farber Cancer Institute [DFCI], Roswell Park Cancer Institute, and Mayo Clinic Arizona). The questionnaire was developed with input from a focus group of HCT nurses and social workers, and underwent formal cognitive debriefing with HCT patients. HCT-related clinical outcomes associated with hardship will be assessed at one year. We present the financial experience of the first cohort of DFCI patients.

Results: As of October 1, 2014, of 174 surveys mailed, 124 had been received (71%). Patients were a median of 174 days post-HCT. The mean age was 57.6 years, 49% had had an allogeneic transplant, 95% were white, 75% were married, 24% had at least one child at home, 52% were currently working at least part-time or taking a leave of absence, and 46% had at least a bachelor's degree. Patients came from 10 states; the top three were MA (45%), ME (14%) and NY (13%). Compared to before transplant, 48% reported a decline in monthly household income. Nearly half (48%) were also only somewhat, slightly or not at all satisfied with their present financial situation, and 41% reported somewhat, moderate or extreme difficulty in making bill payments. About one out of five (21%) reported substantial hardship, defined as not having enough money at the end of the month, and 52.4 % (95% CI [43.5, 61.3]) reported either unsatisfactory income, difficulty making payments, or substantial hardship. Transplant type, gender, age, race, employment and college degree were not significantly associated with substantial hardship; however, being unmarried (p< .03) and lower income level (p<.02) were. Patients reported several financial coping strategies post-HCT (see table), which differed among those with substantial hardship.

	Reduced spending on essential items	Withdrew from savings	Borrowed money to pay bills	Reduced leisure activities	Cut back on prescribed medicine
Percent of all respondents	47%	43%	24%	59%	5%
Odds ratio for substantial hardship vs. other [95% CI]	6.4 [ 2.2, 18.7]	3.5 [ 1.4, 8.9]	7.9 [ 3.0, 20.7]	7.2 [2.0, 25.6]	8.4 [1.4, 48.6]

Conclusions: The majority of HCT patients face financial difficulties, particularly those who are not married or have more limited income. Coping strategies vary, although spending on prescription medicines is largely preserved. Several strategies are much more prevalent among those with substantial hardship. The ultimate effects of financial burden on HCT outcomes remain to be demonstrated.