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

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.

Qualitative semi-structured interviews.

Individuals treated with dialysis and inactive on the transplant list (n = 20) and transplant clinicians (n = 6) from an urban transplant center.

The adaptation of CAPABLE into CAPABLE-transplant.

Following Braun and Clark's method of thematic analysis to inform intervention adaptation.

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.

A single-center perspective and small sample size.

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.