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Kidney Week

Abstract: FR-PO0971

Intervention Adaptation to Address Symptom Burden and Inactive Kidney Transplant Wait-List Status

Session Information

Category: Transplantation

  • 2102 Transplantation: Clinical

Authors

  • Hladek, Melissa D., Johns Hopkins University School of Nursing, Baltimore, Maryland, United States
  • Hughes, Avrey B, Johns Hopkins University School of Nursing, Baltimore, Maryland, United States
  • Crews, Deidra C., Johns Hopkins University Department of Medicine, Baltimore, Maryland, United States
  • Brennan, Daniel C., Johns Hopkins University Department of Medicine, Baltimore, Maryland, United States
  • McAdams-DeMarco, Mara, New York University Grossman School of Medicine, New York, New York, United States
  • Szanton, Sarah, Johns Hopkins University School of Nursing, Baltimore, Maryland, United States
Background

People on the kidney transplant waitlist with a high symptom burden have an increased risk of waitlist mortality as do people with inactive waitlist status. Community Aging in Place- Advancing Better Living for Elders (CAPABLE) is a person-environment intervention focused on achieving patient-directed goals to improve symptoms and function in older adults. CAPABLE uses home visits from a nurse, occupational therapist, and handy worker, demonstrating significant improvements in symptoms, healthcare utilization and Medicare spending for participants. We aimed to adapt CAPABLE to the kidney transplant waitlist population.

Methods

Using a human-centered design approach, we collected 16 photovoice journals, conducted semi-structured interviews with 35 patients, 7 clinicians, and held 5 focus groups, including representation from two local transplant community organizations and caregivers. Focus groups iteratively built on each other to identify problems, brainstorm solutions, and refine operationalization of our findings. We created personas and storyboards to further flush out the gaps and solutions.

Results

We determined three distinct barriers unique to this population around the themes of mental fortitude, support systems, and effective communication. Adaptations to the CAPABLE program involved changes to the types of participants to be included and changes to the intervention itself. First, changes were made to the age inclusion criteria (significantly lowered), waitlist status and symptom burden criteria. Second, adaptations to the original CAPABLE intervention included adding a robust digital literacy component to address health literacy, healthcare communication and social support needs identified. Tools to promote agency in healthcare team communication were emphasized, and motivational environmental cues were added.

Conclusion

The human-centered design process guided necessary adaptations to the CAPABLE intervention, which revealed new opportunities to holistically support individuals on the kidney transplant waitlist—highlighting the value of tailoring care to their lived experiences, goals, and challenges. A randomized control pilot trial is now underway to test this intervention (called CAPABLE Transplant).

Funding

  • NIDDK Support

Digital Object Identifier (DOI)