“You gotta keep climbing that mountain to reach the goal”: Perspectives of Transplant Waitlisted Dialysis Patients. A Qualitative Study

Abstract

Rationale & Objective: There is critical need for interventions that help improve outcomes for individuals requiring a kidney transplant but are waitlisted as inactive. We explored the perspectives of dialysis patients and clinicians to develop CAPABLE-Transplant. “Community Aging in Place- Advancing Better Living for Elders” (CAPABLE) utilizes a home visiting Registered Nurse, Occupational Therapist and handy worker who work with older adults to create action plans that change behaviors to improve safety, independence and health. Study Design Qualitative semi-structured interviews. Setting & Participants: Individuals on dialysis and inactive on the transplant list (n=20) and transplant clinicians (n=6) from an urban transplant center. Outcomes The adaptation of CAPABLE into CAPABLE-Transplant. Analytical Approach Following Braun and Clark’s method of thematic analysis to inform intervention adaptation. Results Three major themes were identified: 1.Mismatch of Expectations with subthemes: Communication keeps breaking down; High center volume impedes follow up; 2.Agency: from Fragmentation to Functionality with subthemes: Patient agency needs enhancing; Digital literacy key to improving communication capacity; Pre-post-transplant education needs to be ongoing; 3.“You gotta keep climbing that mountain ‘til you reach the goal” with subtheme: Navigating compliance while struggling with symptom burden. Limitations A single-center perspective, small sample size. Conclusions By comparing the patient and clinician experience, specific adaptations for CAPABLE-Transplant that address modifiable factors to decrease time inactive on the kidney transplant waitlist were identified. These included adding a digital literacy component to the home visiting team to improve patient-clinician communication; ongoing education about the transplant process to improve health literacy; and activities to strengthen mental fortitude, self-efficacy and agency. The core components of CAPABLE remain important to improve physical function, medication management, pain, and depressive symptoms. Patients and clinicians expressed support for CAPABLE-Transplant to help improve self-efficacy, agency and engagement along the transplant continuum.