Health-related quality of life in pre-adolescent liver transplant recipients with biliary atresia: A cross-sectional study

• Published in: Clinics and research in hepatology and gastroenterology 2019-08, Vol.43 (4), p.427-435
• Main Authors: Miserachs, Mar, Parmar, Arpita, Bakula, Agnieszka, Hierro, Loreto, D'Antiga, Lorenzo, Goldschmidt, Imeke, Debray, Dominique, A McLin, Valérie, Casotti, Valeria, Pawłowska, Joanna, Camarena, Carmen, R Otley, Anthony, Baumann, Ulrich, L Ng, Vicky
• Format: Article
• Language: English
• ISSN: 2210-7401; 2210-741X
• DOI: 10.1016/j.clinre.2018.10.018

Pediatric recipients of liver transplantation (LT) often report lower Health-Related Quality of Life (HRQOL) than healthy controls when assessed on generic HRQOL measurement tools. The recent addition of the Pediatric Liver Transplant Quality of Life (PeLTQL), a novel disease-specific HRQOL instrument for pediatric LT recipients, into the clinical armamentarium of tools now routinely available to clinical care teams, provides the unique opportunity to identify disease-related challenges in children who have undergone this life-saving intervention. This study assesses HRQOL in pre-adolescent aged patients with a primary diagnosis of biliary atresia (BA) who underwent LT as an infant, using both generic and disease-specific HRQOL instruments validated for children. We also examined modifiable factors associated with HRQOL after pediatric LT. HRQOL was the primary outcome of this study assessed using the disease-specific PeLTQL and the generic Pediatric Quality of Life Inventory 4.0 (PedsQL). Exposure variables of interest included medication status (e.g., monotherapy, dual therapy) and participation in sports. A total of 70 (56% female, mean age 9.89 ± 1.25 years) pediatric LT recipients (mean interval since LT was 9.0 ± 1.26 years) comprised the study cohort. LT recipients reported significantly lower PedsQL Scores relative to the general population. Immunosuppression monotherapy was associated with higher patient-reported PeLTQL Scores, and sports participation was associated with higher parent-reported PedsQL Scores. Pre-adolescents who underwent LT as an infant with BA, self-report low HRQOL on both disease-specific and generic HRQOL tools. Further research targeting sports participation and simplifying immunosuppression may further optimize quality of life years restored by life-saving LT.