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

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.

Retrospective cohort review of all pen-paper PeLTQLs completed by patient-parent dyads (2013-2022). Clinical, laboratory, and radiologic data were recorded.

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.

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.