Experience of Older Adults and Their Family Members in the Kidney Transplant Evaluation

Importance: Transplant can be a valuable treatment option for older adults with kidney failure, and recent initiatives encourage more frequent referral to transplant centers. However, the evaluation process can be challenging, and most older adults do not ultimately receive a kidney. Objective: To elucidate the perspectives and experiences of older adults with advanced kidney disease and their family members regarding the kidney transplant evaluation process. Design, Setting, and Participants: This qualitative study, conducted between December 19, 2022, and February 5, 2024, included adults aged 65 years or older with advanced kidney disease (estimated glomerular filtration rate ≤20 mL/min/1.73 m2, receiving dialysis, or with a functioning kidney transplant) and their family members in Seattle, Washington. Main Outcomes and Measures: Perspectives and experiences of patients and family members, identified through inductive thematic analysis of semi-structured interviews. Results: A total of 26 older adults (16 [61.5%] men; median age, 68 years [range, 65-74 years]) with advanced kidney disease and 7 of their family members (4 [57.1%] women; median age, 65 years [range, 36-75 years]) were interviewed. Three dominant themes pertaining to the kidney transplant evaluation process were identified: (1) committed to transplant, (2) a complex and protracted process, and (3) responsibility without power. Because receiving a kidney was such an important priority, most participants were willing to engage in what could be a demanding process of testing and treatment narrowly focused on this future goal. However, the transplant evaluation could be lengthy, demanding, opaque, and fragmented, and patients often put other aspects of their lives on hold while awaiting an uncertain result. Patients and families often felt personally responsible for navigating and completing the transplant evaluation despite having little power to shape this process. Feeling responsible for the continued progress of a high-stakes evaluation process while remaining dependent on clinical teams and family members for support could strain relationships. Conclusions and Relevance: This qualitative study found that older adults with advanced kidney disease and their family members were highly motivated to receive a kidney transplant but engagement in an evaluation process, over which they had little control, could have far-reaching implications for patients and families. These findings underline the importance of making the transplant evaluation process more transparent and person centered and of helping patients and families who are contemplating or engaged in the process to understand what to expect.