“You Gotta Keep Climbing That Mountain to Reach the Goal”: Perspectives of Transplant Waitlisted Dialysis Patients. A Qualitative Study

Rationale & Objective: There is a 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 community aging in place-advancing better living for elders (CAPABLE)–transplant. 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 treated with 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 volume at center impedes follow-up; (2) agency: from fragmentation to functionality with subthemes: patient agency needs enhancing; digital literacy is key to improving communication capacity; preposttransplant education needs to be ongoing; (3) “You gotta keep climbing that mountain ‘till you reach the goal” with a subtheme of navigating compliance while struggling with symptom burden. Limitations: A single-center perspective and 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. Plain-Language Summary: People listed as inactive on the kidney transplant waitlist need interventions to decrease time listed as inactive. Qualitative interviews with dialysis patients and transplant clinicians identified areas of need that could be addressed by a home-based intervention. We used the data to adapt an existing intervention called community aging in place-advancing better living for elders (CAPABLE) into CAPABLE-transplant. Adding a digital literacy specialist to help improve patient/clinician communication; ongoing education about the transplant process to improve health literacy, and activities to strengthen mental fortitude and self-efficacy could decrease inactive time. The original components of CAPABLE—a registered nurse, occupational therapist, and handy worker to increase physical function, medication, pain, and depression management remains crucial.