Background. Patients face obstacles in finding a transplant program that meets their healthcare needs. Acceptance criteria and waiting times vary by region and program. The Scientific Registry of Transplant Recipients provides program-specific information, but it is unclear what patients and referring physicians need to know. Methods. We examined variability in program-specific characteristics that could influence access to transplantation. We also conducted 20 interviews and 16 focus groups with transplant candidates, recipients, and their family members. Participants were shown prototypes of a patient-specific search tool and evaluated its capacity to identify programs tailored to the needs of individual patients. Results. The distribution of recipient and donor characteristics that may impact access to transplantation, such as recipients on Medicaid, varied across programs (all with P < 0.01). Several themes emerged related to impressions of access to transplantation and the usability of patient-specific search functions. Perceptions of the prototypes and results varied, but were positive overall and support providing an individualized search of program level data. Participants revealed significant barriers to identifying and evaluating transplant programs and suggest that patient-specific search results reduce the anxiety associated with selecting a program. Conclusions. Providing patient-specific tools is valued by patients and important to maximizing access to transplant.
Bibliographical noteFunding Information:
Received 23 April 2020. Revision received 15 May 2020. Accepted 10 June 2020. 1Hennepin Healthcare Research Institute, Minneapolis, MN. 2College of Design, University of Minnesota, Minneapolis, MN. 3Scientific Registry of Transplant Recipients, Hennepin Healthcare Research Institute, Minneapolis, MN. 4Department of Surgery, University of Minnesota, Minneapolis, MN. 5Department of Medicine, University of Minnesota, Minneapolis, MN. 6Department of Epidemiology and Community Health, University of Minnesota, Minneapolis, MN. ORCID: 0000-0001-7699-9859 (W.T.M.) This material is based in part upon work supported by the Agency for Healthcare Research and Quality (AHRQ) R01 HS 24527 (A.I.). This research was also supported by the National Institute of Health’s Center for Advancing Translational Sciences, grants TL1R002493 and UL1TR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Health’s Center for Advancing Translational Sciences and other funders.
PubMed: MeSH publication types
- Journal Article