Concerns regarding the financial aspects of kidney transplantation: perspectives of pre-transplant patients and their family members

Background: African American and non-African American pre-transplant patients' and their families' concerns about the financial costs of kidney transplantation have not been well studied.

Methods: We conducted structured group interviews among pre-transplant patients (seven African American, five non-African American) and their family members (six African American, five non-African American) to identify their concerns about transplant health insurance coverage, out-of-pocket expenses, and living donor expenses. We reviewed transcribed group audio recordings and identified common discussion themes.

Results: African American and non-African American patients and family members expressed uncertainty about which transplant-related costs were covered by health insurance and wanted information about how to choose insurance policies accordingly. Patients were particularly concerned about the impact of pre-existing illness on securing optimal health insurance, while family members wanted information about non-insurance-based financial resources. Both patients and family members expressed concern about paying for immunosuppressant medications and about gradual loss of insurance benefits after transplantation. Both patients and family members also expressed concern about potential financial hardships for living donors.

Conclusion: African American and non-African American pre-transplant patients and families expressed a broad range of concerns about transplant health insurance policies, out-of-pocket expenses, non-insurance-based financial resources, and resources to address donors' financial burden. Efforts to improve education and develop more comprehensive transplant insurance policies are needed to facilitate informed decision-making for potential transplant recipients and donors.