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.
Longitudinal prospective evaluation of quality of life in adult patients before and one year after liver transplantation