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. 2021 Apr 27;7(5):e695.
doi: 10.1097/TXD.0000000000001140. eCollection 2021 May.

Designing a Liver Transplant Patient and Family Decision Support Tool for Organ Offer Decisions

Cory R Schaffhausen  1 , Marilyn J Bruin  2 , Sauman Chu  2 , Warren T McKinney  1 , Jack R Lake  3 , Srinath Chinnakotla  4 , Ajay K Israni  5   6
Affiliations

Designing a Liver Transplant Patient and Family Decision Support Tool for Organ Offer Decisions

Cory R Schaffhausen et al. Transplant Direct. .

Abstract

Background: 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.

Methods: In the first phase, we sought to understand provider experiences when counseling patients about donor risks and donor offers. We conducted interviews and focus groups with liver transplant providers at 1 local center and at a national clinician conference. Twenty providers participated: 15 hepatologists and 5 surgeons. The provider feedback was used to create an initial outline of content that is consistent with decision support frameworks. In a second phase, graphic design collaborators created mockups of a patient-friendly tool. We reviewed mockups with 4 transplant coordinators and 9 liver transplant candidates for feedback on clarity and utility to prepare for an organ offer. Patient responses allowed a comparison of perceived readiness to receive an offer call before and after viewing mockups.

Results: We identified themes relating to the offer process, repetition and timing of education, and standardization and tailoring of content. The results indicated a gap in available education after the evaluation session, and information specific to offer decisions is needed. Patient feedback emphasized the need to review the offer process before a real offer.

Conclusions: Patients and providers responded favorably to a patient tool addressing existing gaps in education while waiting for a donor offer. Additional patient, family, and provider feedback will guide the development of an interactive tool to prepare patients and families for an offer decision.

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Conflict of interest statement

The authors declare no conflicts of interest.

Figures

FIGURE 1.
FIGURE 1.
Overview of the stakeholder input process and future work to develop an education tool to prepare patients for an organ offer decision. AASLD, American Association for the Study of Liver Diseases.
FIGURE 2.
FIGURE 2.
An example of the design of a patient-friendly visual layout representing sections from the content outline (color image converted to grayscale).
See this image and copyright information in PMC

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