Ethical provision of hemodialysis: Patients' perspectives on financial hardship and physician counseling in India

Stanford University, Stanford CA

Investigators

Linked publications, trials & patents

Abstract

PROJECT SUMMARY/ABSTRACT Background: Even as countries work to expand availability of dialysis therapy, little is known about the experiences of patients on dialysis in resource-constrained settings. India now provides reimbursement for the dialysis procedure for patients in poverty, but it is unclear whether this translates into any meaningful improvement in the financial hardship experienced by their households. Further, it is unclear whether patients are engaged in decisions to initiate hemodialysis. Objectives: We plan to describe the household financial burden of maintenance hemodialysis in Kerala, India, and the availability of governmental support and its association with dialysis withdrawal. We will compare levels of engagement in treatment decisions among patients in India with those in the U.S., and identify elements important for engaging patients in shared decision-making. Finally, we will describe the association of engagement in shared decision-making with treatment withdrawal in both populations. Methods: Working in Kerala, India, we will recruit 700 patients undergoing maintenance hemodialysis in public and private units. We will administer a questionnaire that assesses demographic, clinical, and financial data and probes patients? engagement in the decision to initiate dialysis, and expressed desire for advance care planning. We will then follow up at 6 months and 1 year post questionnaire administration to estimate rates of withdrawal from dialysis. We will compare our data on patient engagement with data from the USRDS Study on Treatment Preferences, undertaken by the USRDS Special Studies Center for Palliative and End of Life Care. Expected Results: We expect that the majority of persons on hemodialysis in India will experience significant financial hardship, despite government support for the dialysis procedure itself, and that the governmental support will not decrease the likelihood of dialysis withdrawal. Experience with shared decision-making and engagement in treatment will be less common among patients in India versus the U.S., with a higher level of engagement being associated with higher likelihood of withdrawal in both populations. Innovation: Our study will be among the first to assess household financial burden of hemodialysis, and to describe patient engagement in and preferences for shared decision-making when initiating dialysis therapy in India. Significance: As the global burden of ESRD continues to grow, our study will inform approaches for financial risk protection and physician-patient counseling for patients on dialysis in resource-constrained settings. !