Date: Saturday, May 30, 2020
Session Time: 3:15pm-4:00pm
Presentation Time: 3:30pm-4:00pm
*Purpose: The Scientific Registry of Transplant Recipients (SRTR) data was used to create a website with a tailored decision guide to help inform patient decisions about choosing a transplant center: www.transplantcentersearch.org. The tool summarizes factors to consider and provides transplant center data to help identify centers that have recently transplanted similar patients. Engaging patients to understand how the information is interpreted and used is a critical step to providing patient-friendly data.
*Methods: Structured usability testing was used to evaluate website prototypes and to inform new iterations based on patient and family feedback. Participants included candidates and family members from 2 centers in the midwestern US seeking kidney, liver, heart, and lung transplantation. Each 30-60 minute test used a think-out-loud method. Participants answered questions from an interview guide and verbally described how they interacted with a sequence of website pages. Participants viewed real data with deidentified center names.
*Results: Participants included 34 candidates (20 kidney, 6 liver, 5 heart, 3 lung) and 4 family members. Average age was 59 (min 31; max 73), 35% of participants were female, and 82% white. After revisions during usability testing, the sequence of organ-specific website pages included: data entry about the candidate, a summary decision guide about what center factors can be considered based on the candidate (e.g. an Age ≥ 70 might impact choices) [figure1], and a list of center search results.
*Conclusions: Patients and family provided necessary feedback to understand how website content would be interpreted and used. This engagement resulted in a website tailored to patient characteristics to provide SRTR data and inform patient decisions about what centers have recently transplanted patients like them. Additional feedback will be collected from national patient groups.
To cite this abstract in AMA style:Schaffhausen CR, Chu S, Bruin M, Matas A, Hertz M, Martin C, Lake J, Kim W, Biggins S, Snyder JJ, Kasiske BL, Israni AK. Creating a Patient Website to Search for Transplant Centers: www.transplantcentersearch.org [abstract]. Am J Transplant. 2020; 20 (suppl 3). https://atcmeetingabstracts.com/abstract/creating-a-patient-website-to-search-for-transplant-centers-www-transplantcentersearch-org/. Accessed April 16, 2021.
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