Patients' Expectations and Success Criteria for Liver Transplantation

Patient-reported outcomes are important to consider when the relative success of liver transplantation (LT) is being evaluated. Our primary objective was to examine the expectations for LT and the criteria for its success across 4 domains of functioning (pain, fatigue, emotional distress, and interference with daily activities) from the perspective of patients who were wait-listed for LT. One hundred four adult patients with a mean wait-list time of 16.5 ± 13 months completed a semistructured interview with a modified version of the Patient-Centered Outcomes Questionnaire (PCOQ). The patients reported moderate usual levels of pain, fatigue, emotional distress, and interference with daily activities (mean rating range = 3.8-6.2), and they attached great importance to improvements in these domains after LT (mean rating range = 7.3-8.0). Patients considered a mean reduction in pain of 33% to be a successful LT outcome. A reduction in fatigue of 56%, a reduction in emotional distress of 44%, and a reduction in interference with daily activities of 54% represented successful LT across these domains. Patients with more severe illness had higher expectations for fatigue (r = -0.30, P = 0.002) and interference with daily activities (r = -0.24, P = 0.015). Cluster and correlational analyses provided support for the validity of the PCOQ with LT patients. Our findings underscore the importance and value of using patient-centered assessments to better understand the ways in which patients prioritize LT outcomes and define transplantation success. Patient-centered assessments have the potential to facilitate provider-patient communication by helping patients to prioritize their goals for LT and make informed choices on the basis of those priorities.