Designing a patient-specific search of transplant program performance and outcomes: Feedback from heart transplant candidates and recipients

Warren T. McKinney; Cory R. Schaffhausen; David Schladt; Marylin J. Bruin; Sauman Chu; Jon J. Snyder; Cindy Martin; Tamas Alexy; Bertram Kasiske; Ajay K. Israni

doi:10.1111/ctr.14183

Designing a patient-specific search of transplant program performance and outcomes: Feedback from heart transplant candidates and recipients

Warren T. McKinney, Cory R. Schaffhausen, David Schladt, Marylin J. Bruin, Sauman Chu, Jon J. Snyder, Cindy Martin, Tamas Alexy, Bertram Kasiske, Ajay K. Israni

Research output: Contribution to journal › Article › peer-review

6 Scopus citations

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.

Original language	English (US)
Article number	e14183
Journal	Clinical Transplantation
Volume	35
Issue number	2
DOIs	https://doi.org/10.1111/ctr.14183
State	Published - Feb 2021

Bibliographical note

Funding Information:
This material is based in part upon work supported by the Agency for Healthcare Research and Quality (AHRQ) R01 HS 24527 (AI). 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. Additional support comes from AHRQ and the Patient‐Centered Outcomes Research Institute (PCORI) grant K12HS026379 (C.S).

Funding Information:
The data reported here have been supplied by the Hennepin Healthcare Research Institute (HHRI) as the contractor for the Scientific Registry of Transplant Recipients (SRTR). The interpretation and reporting of these data are the responsibility of the author(s) and in no way should be seen as an official policy of or interpretation by the SRTR or the US Government.

Publisher Copyright:
© 2020 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd

Keywords

decision-making
heart transplantation
qualitative
registries
Feedback
Humans
Heart Transplantation
Registries
Waiting Lists
Tissue Donors
Transplant Recipients

PubMed: MeSH publication types

Research Support, U.S. Gov't, P.H.S.
Journal Article
Research Support, N.I.H., Extramural

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10.1111/ctr.14183

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McKinney, W. T., Schaffhausen, C. R., Schladt, D., Bruin, M. J., Chu, S., Snyder, J. J., Martin, C., Alexy, T., Kasiske, B., & Israni, A. K. (2021). Designing a patient-specific search of transplant program performance and outcomes: Feedback from heart transplant candidates and recipients. Clinical Transplantation, 35(2), Article e14183. https://doi.org/10.1111/ctr.14183

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title = "Designing a patient-specific search of transplant program performance and outcomes: Feedback from heart transplant candidates and recipients",

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.",

keywords = "decision-making, heart transplantation, qualitative, registries, Feedback, Humans, Heart Transplantation, Registries, Waiting Lists, Tissue Donors, Transplant Recipients",

author = "McKinney, {Warren T.} and Schaffhausen, {Cory R.} and David Schladt and Bruin, {Marylin J.} and Sauman Chu and Snyder, {Jon J.} and Cindy Martin and Tamas Alexy and Bertram Kasiske and Israni, {Ajay K.}",

note = "Funding Information: This material is based in part upon work supported by the Agency for Healthcare Research and Quality (AHRQ) R01 HS 24527 (AI). 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. Additional support comes from AHRQ and the Patient‐Centered Outcomes Research Institute (PCORI) grant K12HS026379 (C.S). Funding Information: The data reported here have been supplied by the Hennepin Healthcare Research Institute (HHRI) as the contractor for the Scientific Registry of Transplant Recipients (SRTR). The interpretation and reporting of these data are the responsibility of the author(s) and in no way should be seen as an official policy of or interpretation by the SRTR or the US Government. Publisher Copyright: {\textcopyright} 2020 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd",

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doi = "10.1111/ctr.14183",

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T2 - Feedback from heart transplant candidates and recipients

AU - McKinney, Warren T.

AU - Schaffhausen, Cory R.

AU - Schladt, David

AU - Bruin, Marylin J.

AU - Chu, Sauman

AU - Snyder, Jon J.

AU - Martin, Cindy

AU - Alexy, Tamas

AU - Kasiske, Bertram

AU - Israni, Ajay K.

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PY - 2021/2

Y1 - 2021/2

N2 - 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.

AB - 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.

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KW - Heart Transplantation

KW - Registries

KW - Waiting Lists

KW - Tissue Donors

KW - Transplant Recipients

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Designing a patient-specific search of transplant program performance and outcomes: Feedback from heart transplant candidates and recipients

Abstract

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