Identifying Major Barriers to Home Dialysis (the IM-HOME Study): Findings from a National Survey of Patients, Care Partners, and Providers

Rationale & ObjectiveDeveloping strategies to improve home dialysis use requires a comprehensive understanding of barriers. We sought to identify the most important barriers to home dialysis use from the perspective of patients, care partners, and providers.Study DesignThis is a convergent parallel mixed-methods study.Setting & ParticipantsWe convened a seven-member advisory board of patients, care partners, and providers who collectively developed lists of major patient/care partner-perceived barriers and provider-perceived barriers to home dialysis. We used these lists to develop a survey that was distributed to patients, care partners, and providers—through the American Association of Kidney Patients and the National Kidney Foundation. The surveys asked participants to: 1) rank their top three major barriers (quantitative); and 2) describe barriers to home dialysis (qualitative).Analytical ApproachWe compiled a list of the top three patient/care partner-perceived and top three provider-perceived barriers (quantitative) and conducted a directed content analysis of open-ended survey responses (qualitative).ResultsThere were 522 complete responses (233 providers; 289 patients/care partners). The top three patient/care partner-perceived barriers were: fear of performing home dialysis; lack of space; and the need for home-based support. The top three provider-perceived barriers were: poor patient education; limited mechanisms for home-based support staff, mental health, and education; and lack of experienced staff. We identified nine themes through qualitative analysis: limited education; financial disincentives; limited resources; high burden of care; built environment/structure of care delivery that favor in-center hemodialysis; fear and isolation; perceptions of inequities in access to home dialysis; provider perspectives about patients; and patient/provider resiliency.LimitationsThis was an online survey that is subject to non-response bias.ConclusionsThe top three barriers to home dialysis for patient/care partners and providers incompletely overlap, suggesting the need for diverse strategies that simultaneously address patient-perceived barriers at home and provider-perceived barriers in the clinic.