Patient perspectives on liver transplant evaluation: A qualitative study

Liver transplant (LT) evaluation is a complex process for patients involving multi-step and parallel medical, surgical, and psychosocial assessments of a patient’s appropriateness for transplant. Patients may experience difficulties in navigating the evaluation process, potentially leading to disengagement and resulting in further health decline or death prior to completing evaluation. We aimed to identify and characterize patients’ perceptions of undergoing LT evaluation. We performed fourteen 30–45 min, semi-structured interviews between 3/2021–5/2021 with patients at a large LT center. Using the constant comparison method, we individually noted themes within and across interviews and codes. Our analysis generated 5 thematic dimensions related to patient engagement (i.e., patient involvement/activation): (1) psychological impact of evaluation on patients’ lives; (2) information received during evaluation; (3) prior medical experience of the patient; 4) communication between patients and transplant providers; and (5) support system of the patients. Among these dimensions, we identified 8 themes. LT patient engagement is a multi-dimensional component of LT evaluation that incorporates the psychological impact, information received, prior medical experience, communication, and support systems of patients. This work can inform targeted interventions for increasing patient engagement during the LT evaluation process. •1st patient-derived conceptual framework for patient engagement in liver transplant evaluation.•Patients described feeling overwhelmed & trying to make sense of transplant in their lives.•Patients wanted relevant information at relevant times and in their preferred method.•Patients appreciated providers who demonstrated empathy, not just clinical expertise.•Patients relied on personal support systems (e.g., family, friends), who took on multiple roles.