Abstract
As survival post-liver transplantation (LTx) improves, it becomes increasingly important to understand how long-term health-related quality of life (HRQOL) is impacted. This was a longitudinal review examining HRQOL measured by Pediatric Liver Transplant Quality of Life (PeLTQL) in children between 8-17 years who underwent LTx (1.4 [0.8–3.3] years) at least one year prior to assessment. Demographic, medical, anthropometric, and HRQOL data (self-reported and parent proxy) were retrospectively collected over four years (2014–2017) at annual LTx clinic visits. The study included 35 patients (18M, 17F) and their parents/guardians. Parent-proxy and child PeLTQL scores (total, subdomain) showed good to excellent agreement (p > 0.05) and did not change over four years (p > 0.05). Younger age (<12 years) and Caucasian ancestry were associated with higher parental and self-reported perceptions of HRQOL, respectively (future health, coping and adjustment, total scores). Parent perceived lower HRQOL in social–emotional sub-domain (p = 0.03) and the child reported lower sub-domain scores related to coping and adjustment (p = 0.04) when the child was noted to have co-morbid conditions related to mental health and neurocognitive development (25.7%). While child–parent perceptions of HRQOL in a multi-ethnic population of pediatric LTx recipients remain unchanged 10 years post-LTx, adolescents of non-Caucasian ancestry remain a population at risk for lower HRQOL.
Highlights
Liver transplantation (LTx) is a life-saving procedure for children with end-stage liver disease (ESLD)
Variables collected from electronic health records included socio-demographic, liver disease diagnosis, pediatric end-stage liver disease score (PELD) or Model for End-Stage Liver Disease Score (MELD), immunosuppressive therapies, anthropometrics, serum aspartate transaminase (AST), alanine transaminase (ALT), gamma-glutamyltransferase (Υ-GT), albumin, prothrombin time (PT), international normalized ratio (INR), total bilirubin, urea, creatinine, presence of co-morbid conditions, and access to rehabilitation and specialized school services
This study longitudinally evaluated parental and child health-related quality of life (HRQOL) over four years in children who underwent LTx using a validated tool (PeLTQL) that assesses important constructs related to HRQOL
Summary
Liver transplantation (LTx) is a life-saving procedure for children with end-stage liver disease (ESLD). Improvements in immunosuppression (IS) therapy, as well as other technological, medical, and surgical advances, have all contributed to improved outcomes such as graft and patient survival [1]. As survival increases, understanding factors affecting health-related quality of life (HRQOL) becomes a significant priority. In children who have undergone LTx, HRQOL has shown to be significantly reduced compared to the healthy population [3,4,5]. Common issues affecting pediatric patients post-LTx are the need for daily immunosuppressant medication, long-term medical follow-up, risk of de novo malignancies, anxiety over liver rejection, and risk for depression [6,7,8]
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