Journal article
Health-related quality of life in pre-adolescent liver transplant recipients with biliary atresia: A cross-sectional study.
- Miserachs M Transplant and regenerative medicine centre, division of pediatric gastroenterology, hepatology and nutrition, the hospital for sick children, university of Toronto, Toronto, Ontario, Canada; Universitat Autònoma de Barcelona, Bellatera, Spain.
- Parmar A Transplant and regenerative medicine centre, division of pediatric gastroenterology, hepatology and nutrition, the hospital for sick children, university of Toronto, Toronto, Ontario, Canada.
- Bakula A Instytut Pomnik-Centrum Zdrowia Dziecka, Warsaw, Poland.
- Hierro L Service of pediatric hepatology and transplantation, hospital universitario La Paz, Madrid, Spain.
- D'Antiga L Hospital Papa Giovanni XXIII, Bergamo, Italy.
- Goldschmidt I Medizinischen Hochschule Hannover, Hannover, Germany.
- Debray D Pediatric hepatology unit, AP-HP, hôpital Necker-Enfants Malades, université Paris Descartes, Paris, France.
- A McLin V Hôpitaux universitaires de Genève, Geneva, Switzerland.
- Casotti V Hospital Papa Giovanni XXIII, Bergamo, Italy.
- Pawłowska J Instytut Pomnik-Centrum Zdrowia Dziecka, Warsaw, Poland.
- Camarena C Service of pediatric hepatology and transplantation, hospital universitario La Paz, Madrid, Spain.
- R Otley A Division of gastroenterology and nutrition, department of pediatrics, IWK Health Centre, Halifax, Nova Scotia, Canada; Department of pediatrics, faculty of medicine, Dalhousie university, Halifax, Nova Scotia, Canada.
- Baumann U Medizinischen Hochschule Hannover, Hannover, Germany.
- L Ng V Transplant and regenerative medicine centre, division of pediatric gastroenterology, hepatology and nutrition, the hospital for sick children, university of Toronto, Toronto, Ontario, Canada. Electronic address: vicky.ng@sickkids.ca.
- 2018-12-12
Published in:
- Clinics and research in hepatology and gastroenterology. - 2019
Children
Immunosuppression
Patient-reported outcome
Sports and adherence
Biliary Atresia
Canada
Child
Cross-Sectional Studies
Europe
Female
Health Surveys
Humans
Immunosuppression
Infant
Liver
Liver Transplantation
Male
Patient Reported Outcome Measures
Quality of Life
Sports
Survivorship
Transplant Recipients
English
OBJECTIVE
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.
METHODS
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.
RESULTS
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.
CONCLUSIONS
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.
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.
METHODS
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.
RESULTS
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.
CONCLUSIONS
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.
- Language
-
- English
- Open access status
- closed
- Identifiers
-
- DOI 10.1016/j.clinre.2018.10.018
- PMID 30528863
- Persistent URL
- https://sonar.ch/global/documents/46765
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