Creating a patient-centered report card for solid organ transplant candidates

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Persistent link to this item

https://hdl.handle.net/11299/264970

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Keywords

Organ Transplantation

Patient-centered

Qualitative

Decision Making

Collection period

2016-07-01
2018-09-30

Date completed

2020-08-30

Date updated

Time period coverage

Geographic coverage

Source information

Journal Title

Journal ISSN

Volume Title

Title

Creating a patient-centered report card for solid organ transplant candidates

Published Date

2024-08-15

Authors

Israni, Ajay K.

Bruin, Marilyn

Chu, Sauman

McKinney, Warren T.

Schaffhausen, Cory

Schladt, David

Group

Author Contact

McKinney, Warren
wmckinney@hhrinstitute.org

Type

Dataset
Other Dataset

Abstract

Choosing a transplant center that will accept a particular candidate can be difficult and challenging for patients with end-stage organ failure. As transplant centers have varying levels of expertise, interests, and outcomes of solid organ transplant, patient health-related characteristics influence the variation in candidates centers will accept. Most transplant candidates undergo waitlist work-ups as outpatients and many undergo transplant at centers not closest to their homes. Some are listed at more than one center. Several studies suggest that patients have a choice of centers. The PI, as Deputy Director of the Scientific Registry of Transplant Recipients (SRTR), provides comparative information to the public about each solid organ transplant center in the United States. The risk adjusted outcomes, in the report cards, account for the transplant recipient's health-related characteristics, donor characteristics and transplant related factors. Many transplant centers provide a print-out of this SRTR report card to their candidates to comply with Centers for Medicare & Medicaid rules. Unfortunately, in their current format, the report cards are not designed for transplant candidates, many of whom may have low health literacy and numeracy. The proposed work aims to develop and evaluate a patient-centered website and printouts of the SRTR report cards that will effectively communicate comparative information to transplant candidates about their alternatives when choosing transplant centers. We will develop a novel tool to allow candidates to tailor the report cards to their clinical profiles based on their health-related characteristics and to communicate information on alternative transplant centers that perform transplants in patients like them. The website will also allow patients to self-refer to centers. Here, we provide copies of the interview / focus group guide as well as examples of the demographic / clinical questionnaires completed by study participants. We are releasing these materials to allow for greater insight into the study and to enhance reproducibility.

Description

A. Filename: AHRQ Discussion Guide Short description: The file includes an example of the discussion guide used for interviews and focus groups. B. Filename: AHRQ Kidney Candidate-Recipient Questionnaire Short description: The file includes the demographic/clinical questionnaire used for kidney patients. C. Filename: AHRQ Kidney Family Questionnaire Short description: The file includes the demographic/clinical questionnaire used for the family members of kidney patients.

Referenced by

https://doi.org/10.1097/tp.0000000000004051
https://doi.org/10.1371/journal.pone.0251102
https://doi.org/10.1097/txd.0000000000001140
https://doi.org/10.1111/ctr.14183
https://doi.org/10.1097/txd.0000000000001036
https://doi.org/10.1002/lt.25715
https://doi.org/10.1097/tp.0000000000002809
https://doi.org/10.1111/ctr.13523

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License

Attribution-NonCommercial 4.0 International
http://creativecommons.org/licenses/by-nc/4.0/

Publisher

Collections

Data Repository for U of M (DRUM)

Funding information

Agency for Healthcare Research and Quality (AHRQ) - R01 HS024527

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Previously Published Citation

Suggested citation

Israni, Ajay K.; Bruin, Marilyn; Chu, Sauman; McKinney, Warren T.; Schaffhausen, Cory; Schladt, David. (2024). Creating a patient-centered report card for solid organ transplant candidates. Retrieved from the Data Repository for the University of Minnesota (DRUM), https://hdl.handle.net/11299/264970.

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