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

ABSTRACT

RATIONALE & OBJECTIVE: Developing 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 DESIGN: This is a convergent parallel mixed-methods study. SETTING & PARTICIPANTS: We convened a 7-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 3 major barriers (quantitative) and (2) describe barriers to home dialysis (qualitative). ANALYTICAL APPROACH: We compiled a list of the top 3 patient/care partner-perceived and top 3 provider-perceived barriers (quantitative). We also conducted a directed content analysis of open-ended survey responses (qualitative). RESULTS: There were 522 complete responses (233 providers; 289 patients/care partners). The top 3 patient/care partner-perceived barriers were fear of performing home dialysis; lack of space; and the need for home-based support. The top 3 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 9 themes through qualitative analysis: limited education; financial disincentives; limited resources; high burden of care; built environment/structure of care delivery that favors in-center hemodialysis; fear and isolation; perceptions of inequities in access to home dialysis; provider perspectives about patients; and patient/provider resiliency. LIMITATIONS: This was an online survey that is subject to nonresponse bias. CONCLUSIONS: The top 3 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. PLAIN-LANGUAGE SUMMARY: There are many barriers to home dialysis use in the United States. However, we know little about which barriers are the most important to patients and clinicians. This makes it challenging to develop strategies to increase home dialysis use. In this study, we surveyed patients, care partners, and clinicians across the country to identify the most important barriers to home dialysis, namely (1) patients/care partners identified fear of home dialysis, lack of space, and lack of home-based support; and (2) clinicians identified poor patient education, limited support for staff and patients, and lack of experienced staff. These findings suggest that patients and clinicians perceive different barriers and that both sets of barriers should be addressed to expand home dialysis use.