Decision support needs of kidney transplant candidates regarding the deceased donor waiting list: A qualitative study and conceptual framework

Abstract

Background: Kidney transplant candidates face complex decisions about transplant options such as living donation or acceptance of lower quality kidneys. We sought to characterize knowledge and decision support needs regarding kidney transplant outcomes and options. Methods: We conducted 10 interviews and four focus groups of 28 adult kidney transplant candidates from two centers in Minnesota. Transcripts were analyzed thematically using a grounded theory approach. Results: We identified four themes: First, candidates have a limited understanding of treatment options and demonstrate confusion or a lack of awareness about waiting list outcomes and prognosis. Second, candidates desired frank discussions about likely outcomes and individualized prognosis. Third, emotional barriers impact how patients make informed decisions. Finally, participants relied on the support of family and friends to help process information, and many favored the medical community engaging their family and friends in their medical decisions. These findings were incorporated into a conceptual model to support kidney transplant candidates in medical decision making. Conclusions: Transplant candidates had limited understanding about treatment options and outcomes on the kidney transplant waiting list. Individualized risk information and cognitive approaches that recognize how patients process information and balance competing risks may improve informed decision making.

Canadian transplant nephrologists’ perspectives on the decision‐making process for accepting or refusing a kidney from a deceased organ donor

“…Patient education is identified as an important factor to facilitate the decision‐making process when a deceased‐donor organ is offered. In a recent qualitative study conducted with kidney TCs on their decision‐making needs while on the deceased‐donor waiting list, Hart et al showed that patients need individualized and tailored information and that information could empower patients . However, they also reported that patient education could be overwhelming and that patients have difficulty remembering all the information provided.…”

“…However, they also reported that patient education could be overwhelming and that patients have difficulty remembering all the information provided. There is also a need to include a peer support network in educational efforts …”

“…In a recent qualitative study conducted with kidney TCs on their decision-making needs while on the deceased-donor waiting list, Hart et al showed that patients need individualized and tailored information and that information could empower patients. 31 However, they also reported that patient education could be overwhelming and that patients have difficulty remembering all the information provided. There is also a need to include a peer support network in educational efforts.…”

“…There is also a need to include a peer support network in educational efforts. 31 Decision aids or calculators were mentioned as a facilitator for clinicians and patients during the decision-making process. The participants in this study were divided on the usefulness of such a tool.…”

Development of the living donation and kidney transplantation information made easy (KidneyTIME) educational animations

“…Routine LKD education is provided to persons with ESKD and their friends/family (when present) during visits to nephrology offices, dialysis facilities, and transplant centers . Despite many opportunities to inform patients about LKD as their kidney disease progresses, limited health system resources, low health literacy, and insufficient exposure to the social network present a challenge for providers . Communication about LKD thus primarily relies on the initiative of the kidney transplant candidates to “get the word out” to others, even though they may not have sufficient capacity (knowledge and self‐efficacy) to do so.…”