Assessing Quality of Life in Pediatric Liver Transplant Recipients: A Single-Center Analysis Using Pediatric Liver Transplant Quality of Life (PeLTQL)
Cindy H Phan1, Amrita Narang1.
1Pediatric, Stanford University School of Medicine, Palo Alto, CA, United States
Introduction: The Pediatric Liver Transplant Quality of Life (PeLTQL) questionnaire is a validated tool designed to assess health-related quality of life (HRQoL) in pediatric liver transplant recipients. This study aimed to assess the quality of life of pediatric liver transplant patients at our center using PeLTQL.
Methods: Between 2022 and 2024, pediatric liver transplant recipients aged 8–17 years, at least one-year post-transplant, completed the PeLTQL questionnaire as part of standard clinical care. Both self-reports (patients) and proxy-reports (caregivers) were reviewed with the patient and family, with resources provided as needed.
Results: A total of 74 dyads from 58 unique patients were included. The mean total self-reported score was 73.48 (±13.22), and the mean total proxy-reported score was 74.33 (±11.48). Among self-reports, 18.67% of participants scored below the 62.5 threshold, indicating "at-risk" status for anxiety. However, only 42.86% of proxies correctly identified these patients, while 57.14% did not.
The highest-scoring questions among both self-reports and proxies were scar-related concerns (37.5% and 26.4%, respectively) and concentration difficulties (26.4% and 30.6%, respectively). Additionally, self-reports highlighted ease of talking about feelings (29.2%), while proxy reports emphasized perceived parental overprotection (22.2%) as being some of the challenges.
Conclusion: This study highlights discrepancies between self-reported and proxy-reported perceptions of quality of life, showing that caregivers often underestimate psychological distress. These findings reinforce the need for patient-centered assessments in clinical practice. PeLTQL remains a valuable tool for evaluating HRQoL in this population and guiding targeted interventions to improve long-term well-being.
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