title: Health-related quality of life in long-term survivors of pediatric liver transplantation.
abstract: The purpose of this study is to measure the health-related quality of life (HRQOL) in children who are long-term survivors of liver transplantation and to pilot the Liver Transplant Disability Scale (LTDS), a newly developed 12-point scale that quantifies chronic medical disability related to liver transplantation. This study is a cross-sectional survey of 51 children surviving liver transplantation by at least 2 years, with a median age of 4.94 years. Functional capacity and utility scores were measured by the Health Utilities Index Mark II (HUI2), and chronic disease-specific medical disability was measured by the LTDS. HUI2 results were compared with a reference population. LTDS scores were compared with utility scores and patient survival 3 years later. Ninety percent of the study patients had functional deficits compared with 50% of controls. Functional impairment was typically mild. The resulting mean utility score, 0.86 +/- 0.13 (0 = dead, 1 = perfect health), was significantly less than that of the reference population, 0.95 +/- 0. 07 (P <.001). LTDS scores ranged from 0 (no disability) to 6 (moderate disability). Seventy-one percent of the children had mild disability (scores 0 to 3), and 29% had moderate disability (scores 4 to 6). LTDS scores did not correlate with utility scores but were predictive of survival. The majority of pediatric liver transplant recipients have mild functional deficits. Their utility scores reflected a high level of HRQOL but were significantly less than those of a reference population. The majority also had mild medical disability, predominantly delayed growth. Medical disability did not correlate with HRQOL but predicted survival 3 years later.
authors.affiliation: Pritzker School of Medicine, The University of Chicago, IL, USA.
authors.forename: D E
authors.initials: DE
authors.lastname: Midgley
authors.forename: T A
authors.initials: TA
authors.lastname: Bradlee
authors.forename: C
authors.initials: C
authors.lastname: Donohoe
authors.forename: K P
authors.initials: KP
authors.lastname: Kent
authors.forename: E M
authors.initials: EM
authors.lastname: Alonso
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D001656:Biliary Atresia / Q000601:surgery; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D002658:Developmental Disabilities / Q000209:etiology; D006305:Health Status Indicators; D006801:Humans; D008107:Liver Diseases / Q000601:surgery; D016031:Liver Transplantation / Q000009:adverse effects; D011788:Quality of Life; D017741:Survivors