Warren T McKinney1, Cory R Schaffhausen1, David Schladt2, Marylin J Bruin3, Sauman Chu3, Jon J Snyder4, Cindy Martin5, Tamas Alexy5, Bertram Kasiske6, Ajay K Israni1,4,6. 1. Hennepin Healthcare Research Institute, Minneapolis, MN, USA. 2. Chronic Disease Research Group, Minneapolis, MN, USA. 3. College of Design, University of Minnesota, Minneapolis, MN, USA. 4. Scientifc Registry of Transplant Recipients (SRTR), Minneapolis, MN, USA. 5. Cardiovascular Division, Department of Medicine, University of Minnesota, Minneapolis, MN, USA. 6. Nephrology Division, Hennepin Healthcare, Minneapolis, MN, USA.
Abstract
BACKGROUND: The Scientific Registry of Transplant Recipients provides transplant program-specific information, but it is unclear what patients and stakeholders need to know. Acceptance criteria for the candidate waitlist and donor organs vary by program and region, but there is no means to search for programs by the clinical profiles of recipients and donors. METHODS: We examined variability in program-specific characteristics that could influence access to transplantation. We also conducted three interviews and three focus groups with heart transplant candidates and recipients. Participants evaluated prototypes of a patient-specific search tool and its capacity to identify programs tailored to specific patient needs. Patient experiences and feedback influenced the development of tools. RESULTS: The distribution of recipient and donor characteristics influenced access to transplantation, as age and body mass index varied across programs (all with p < .01). Several themes emerged related to decision-making and the perceived usability of the patient-specific search. Perceptions of the prototypes varied, but were positive overall and support making the patient-specific search publicly available. Participants revealed barriers to evaluating transplant programs and suggest that patient-specific search results may optimize the process. CONCLUSIONS: The patient-specific tool (http://transplantcentersearch.org/) is valued by heart transplant patients and is important to maximizing access to transplant.
BACKGROUND: The Scientific Registry of Transplant Recipients provides transplant program-specific information, but it is unclear what patients and stakeholders need to know. Acceptance criteria for the candidate waitlist and donor organs vary by program and region, but there is no means to search for programs by the clinical profiles of recipients and donors. METHODS: We examined variability in program-specific characteristics that could influence access to transplantation. We also conducted three interviews and three focus groups with heart transplant candidates and recipients. Participants evaluated prototypes of a patient-specific search tool and its capacity to identify programs tailored to specific patient needs. Patient experiences and feedback influenced the development of tools. RESULTS: The distribution of recipient and donor characteristics influenced access to transplantation, as age and body mass index varied across programs (all with p < .01). Several themes emerged related to decision-making and the perceived usability of the patient-specific search. Perceptions of the prototypes varied, but were positive overall and support making the patient-specific search publicly available. Participants revealed barriers to evaluating transplant programs and suggest that patient-specific search results may optimize the process. CONCLUSIONS: The patient-specific tool (http://transplantcentersearch.org/) is valued by heart transplant patients and is important to maximizing access to transplant.
Authors: Andrew Wey; Sally K Gustafson; Nicholas Salkowski; Bertram L Kasiske; Melissa Skeans; Cory R Schaffhausen; Ajay K Israni; Jon J Snyder Journal: Am J Transplant Date: 2018-08-21 Impact factor: 8.086
Authors: Cory R Schaffhausen; Marilyn J Bruin; Sauman Chu; Helen Fu; Warren T McKinney; David Schladt; Jon J Snyder; W Ray Kim; Jack R Lake; Bertram L Kasiske; Ajay K Israni Journal: Liver Transpl Date: 2020-03 Impact factor: 5.799
Authors: C Blanche; D A Blanche; B Kearney; M Sandhu; L S Czer; A Kamlot; A Hickey; A Trento Journal: J Thorac Cardiovasc Surg Date: 2001-03 Impact factor: 5.209
Authors: M Colvin; J M Smith; N Hadley; M A Skeans; K Uccellini; R Goff; J Foutz; A K Israni; J J Snyder; B L Kasiske Journal: Am J Transplant Date: 2020-01 Impact factor: 8.086
Authors: Kathleen L Grady; Susan Magasi; Elizabeth A Hahn; Sarah Buono; Edwin C McGee; Clyde Yancy Journal: J Heart Lung Transplant Date: 2015-05-04 Impact factor: 10.247
Authors: Mahender Macha; Ezequiel J Molina; Michael Franco; Lisa Luyun; John P Gaughan; James B McClurken; Satoshi Furukawa Journal: Scand Cardiovasc J Date: 2009 Impact factor: 1.589
Authors: Warren T McKinney; Cory R Schaffhausen; Marilyn J Bruin; Sauman Chu; David Schladt; Arthur Matas; Jon Snyder; Bertram Kasiske; Ajay K Israni Journal: Transplant Direct Date: 2020-07-17