Listening to the Patient Voice: Assessing Quality of Life and Anxiety Risk in Pediatric Liver Transplant Recipients

ABSTRACT Background Improved long‐term outcomes after pediatric liver transplantation (LT) necessitate a holistic approach to care that addresses physical, mental, and social–emotional health. The Pediatric Liver Transplant Quality of Life Questionnaire (PeLTQL) is a disease‐specific Patient‐Reported Outcome Measure (PROM) with self‐ and proxy‐versions available; higher scores indicate better health‐related quality of life (HRQOL), and scores ≤ 62.5 denote anxiety risk. Limited data exist on specific patient concerns and dyad discrepancies in disease‐specific PROMs for pediatric LT recipients. This study aimed to examine self‐ and proxy‐PeLTQLs, factors influencing discrepancies, and their relationship to anxiety risk in pediatric LT recipients. Methods Retrospective cohort review of all pen‐paper PeLTQLs completed by patient‐parent dyads (2013–2022). Clinical, laboratory, and radiologic data were recorded. Results PeLTQLs from 140 dyads were analyzed (median patient age at PeLTQL completion 11.1 years, 48% male, 55% Caucasian and 44% Biliary Atresia). Twenty‐two percent of patients were identified as “at‐risk” for anxiety expressing larger concerns about their scar (61% vs. 27%, p < 0.001) and future health (74% vs. 13%, p < 0.001). Overall median self‐ and proxy PeLTQL scores were similar (73 vs. 72.1, p = 0.7) but agreement was poor (ICC 0.44). Parents of at‐risk for anxiety patients underestimated their child's concerns (median self 52.1 vs. proxy 66, p < 0.001) principally about their future health. Conclusion Integrating HRQOL assessment into routine surveillance care for pediatric LT recipients can identify anxiety risk and specific concerns in pediatric LT recipients. Poor patient‐proxy agreement underscores the need to listen to the patient voice to optimize patient‐centered care.