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Patient Feedback of a Patient and Family Decision Support Tool for Liver Organ Offer Decisions

C. Schaffhausen1, S. Chu2, M. Bruin3, S. Chinnakotla3, J. Lake3, A. Israni4

1Hennepin Healthcare Research Institute, Minneapolis, MN, 2University of Minnesota (UMN), Minneapolis, MN, 3UMN, Minneapolis, MN, 4Hennepin Healthcare, UMN, Minneapolis, MN

Meeting: 2021 American Transplant Congress

Abstract number: 1160

Keywords: Donors, marginal, Liver transplantation, Patient education

Topic: Clinical Science » Liver » Liver: MELD, Allocation and Donor Issues (DCD/ECD)

Session Information

Session Name: Liver: MELD, Allocation and Donor Issues (DCD/ECD)

Session Type: Poster Abstract

Session Date & Time: None. Available on demand.

Location: Virtual

*Purpose: For liver transplant candidates on the waiting list, deciding to accept a donor organ with known or potential risk factors can be stressful and can lead to declined offers. Current education for patients and family often takes place during transplant evaluations and can be overwhelming and result in low retention and poor understanding of donor quality. Prior feedback from surgeons and hepatologists (n=20) informed the initial content of a decision support tool for patients and family, including multiple topics to convey concepts about the donor pool, the donor match, the process for reviewing offers, and donor risks. We sought pilot evaluations from transplant coordinators and liver transplant candidates to improve usefulness and relevance.

*Methods: Pilot interviews with liver transplant coordinators and candidates included discussions about current patient education and a review of mockups of a decision support tool. Questionnaires collected participant demographics. Mockups included a series of static images representing a website design to prepare patients and family for an organ offer decision. Initial images describe general topics [Figure 1], followed by specific donor types and risks. Interviews were conducted remotely via video streaming, and audio was recorded. Qualitative feedback on graphics, text, and navigation was summarized to inform future development of an interactive tool.

*Results: 4 transplant coordinators and 9 transplant candidates participated in pilot interviews for the current development phase. Each interview lasted approximately 1 hour. Feedback on the graphic style was positive and reinforced the benefit of a patient-friendly aesthetic. Participants considered the content an appropriate overview of the donor offer process. Participants had varying views of the offer process prior to reviewing the tool, but consistently reported the review was beneficial. A preferred dissemination strategy was to share with patients after an evaluation as a review when MELD scores suggest an offer is feasible. Mockups were iteratively refined based on feedback.

*Conclusions: New decision support tools for offer decisions may address gaps in patient counseling, in particular after evaluations. Stakeholder feedback supports ongoing development of an interactive tool to help patients and family prepare for an offer decision.

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To cite this abstract in AMA style:

Schaffhausen C, Chu S, Bruin M, Chinnakotla S, Lake J, Israni A. Patient Feedback of a Patient and Family Decision Support Tool for Liver Organ Offer Decisions [abstract]. Am J Transplant. 2021; 21 (suppl 3). https://atcmeetingabstracts.com/abstract/patient-feedback-of-a-patient-and-family-decision-support-tool-for-liver-organ-offer-decisions/. Accessed May 10, 2025.

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