Pilot study of patient and caregiver out-of-pocket costs of allogeneic hematopoietic cell transplantation

Abstract

Patient/caregiver out-of pocket costs associated with hematopoietic-cell transplantation (HCT) are not well known. We conducted a pilot study to evaluate patient/caregiver out-of-pocket costs in the first 3 months after allogeneic HCT. Thirty patients were enrolled at three sites. Prior to HCT, participants completed a baseline survey regarding household income and insurance coverage. Subsequently, they maintained a paper-based diary to track daily out-of-pocket expenses for the first 3 months after HCT. Telephone interviews were conducted to followup on missing/incomplete diaries and on study completion. Twenty-five patients/caregivers completed the baseline survey. Among these, the median pre-tax household income was $66,500 (range, $30-$375,000) and 48% had to temporarily relocate close to the transplant center. Insurance coverage was managed care plan (56%), Medicaid (20%), Medicare (17%) and other (8%). Twenty-two patients/caregivers completed ≥4 diaries; the median out-of-pocket expenses were $2,440 (range, $199-$13,769). Patients/caregivers who required temporary lodging had higher out-of-pocket expenses compared to those who did not (median, $5,247 vs. $716). Patients/caregivers can incur substantial out-of-pocket costs over the first 3 months, especially if they need to temporarily relocate close to the transplant center. Our study lays the foundation for future research on early and long-term financial impact of allogeneic HCT on patients/caregivers.

Prevalence and Impact of Financial Hardship among New England Pediatric Stem Cell Transplantation Families

“…Indeed, recent studies in adult recipients of allogeneic HSCT have demonstrated substantial financial burden [28,29]. For example, in a retrospective survey of adult HSCT survivors, Khera et al found that more than two thirds reported their sickness had hurt them financially, and nearly one half reported transplantation-related household income losses of >50% [28].…”

Design of a cost–effectiveness analysis alongside a randomized trial of transplantation using umbilical cord blood versus HLA-haploidentical related bone marrow in advanced hematologic cancer

“…All of these issues are critical but understudied factors in patient, physician and payer decision-making. For example, many patients travel long distances to transplant centers, and they and their families incur significant financial costs associated with transportation, lodging and loss of income during the patient’s extended recovery period [14]. Additionally, while the long-term impact of BMT on patients’ employment and productivity has been reported [40,41], the short-term impact of BMT on work and income loss has not yet been studied.…”

“…In addition, the acquisition cost of the dUCB graft is significantly higher than haplo-BM, and potentially prohibitive for some patients [12,14,15]. There is also uncertainty about the relative rates of hematopoietic recovery and adverse events, both of which could have clinically meaningful impacts on resource use and quality of life.…”

Financial burden after allogeneic hematopoietic cell transplantation: a qualitative analysis from the patient’s perspective

“…2,4-6 In addition, patients reflected on the need for financial planning before HCT because of ongoing medical complications adding to the financial burden, consistent with the approach recommended by Majhail et al 7 Patients recognized navigating the system and lack of knowledge about employment or insurance policies as a big challenge. They appreciated the involvement of social workers and other providers who performed pre-HCT financial screening and counseling and assisted them with financial issues during the course of their HCT.…”