Patient-Related Barriers to Timely Dialysis Access Preparation: A Qualitative Study of the Perspectives of Patients, Family Members, and Health Care Providers

Abstract Rational and Objective A key aspect of smooth transition to dialysis is the timely creation of a permanent access. Despite early referral to kidney care, initiation onto dialysis is still sub-optimal for many patients, which has clinical and cost implications. This study aimed to explore perspectives of various stakeholders on barriers to timely access creation. Study Design Qualitative study Setting & Participants Semi-structured interviews with 96 participants (response rate=67%) including Stage 4 Chronic Kidney Disease (CKD) patients (n=30), new hemodialysis patients with (n=18) and without (n=20) permanent access (arteriovenous fistula [AVF]), family members (n=19) and kidney healthcare providers (n=9). Analytical Approach Thematic analysis Results Patients reported differential levels of behavioral activation towards access creation: avoidance/denial, wait and see, or active intention. Six core themes were identified: 1) lack of symptoms, 2) dialysis fear and practical concerns [exaggerated fear, pain, cost, lifestyle disruptions, work-related concerns, burdening their families], 3) evaluating value against costs/risks of access creation [benefits, threat of operation, viability, prompt for early initiation], 4) preference for alternatives, 5) social influences [hearsay, family involvement, experiences of others], and 6) healthcare provider interactions [mistrust, interpersonal tension, lack of clarity on information]. Themes were common to all groups, while nuanced perspectives of family members and healthcare providers were noted in some sub-themes. Limitations Response bias Conclusions Individual, interpersonal and psychosocial factors compromise dialysis preparation and contribute to sub-optimal dialysis initiation. Our findings support the need for interventions to improve patient and family engagement and to address emotional concerns and misperceptions about preparing for dialysis.