Background: Kidney transplant candidates face complex decisions about transplant options such as living donation or acceptance of lower quality kidneys. We sought to characterize knowledge and decision support needs regarding kidney transplant outcomes and options. Methods: We conducted 10 interviews and four focus groups of 28 adult kidney transplant candidates from two centers in Minnesota. Transcripts were analyzed thematically using a grounded theory approach. Results: We identified four themes: First, candidates have a limited understanding of treatment options and demonstrate confusion or a lack of awareness about waiting list outcomes and prognosis. Second, candidates desired frank discussions about likely outcomes and individualized prognosis. Third, emotional barriers impact how patients make informed decisions. Finally, participants relied on the support of family and friends to help process information, and many favored the medical community engaging their family and friends in their medical decisions. These findings were incorporated into a conceptual model to support kidney transplant candidates in medical decision making. Conclusions: Transplant candidates had limited understanding about treatment options and outcomes on the kidney transplant waiting list. Individualized risk information and cognitive approaches that recognize how patients process information and balance competing risks may improve informed decision making.
Supplemental Materials: Methods Qualitative Methods Dedoose coding software (Dedoose, Hermosa Beach, CA) was used to organize data and identify supporting quotations. Descriptive statistics for focus group participants were calculated stratified by organ type and by local/national site (Table 1). Quantitative Methods Descriptive statistics for survey data were calculated for all randomized respondents and for the analysis set (Table 3). Power calculation Based on an effect size of 0.15 (consistent with pilot studies 1 and similar health care quality reports 2), we estimated that a sample size of 1100 (183 in each arm) achieved 80% power to detect a difference between groups. Estimation of relative risks Statistical analysis used R, version 3.5.2 (https://www.R-project.org/). Multinomial regression used nnet package version7.3-12. 3 Data management used dplyr version 0.7.8. 4
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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