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Health‐related quality of life in long‐term survivors of pediatric liver transplantation
Author(s) -
Midgley Deborah E.,
Bradlee Tatum A.,
Donohoe Christopher,
Kent Kevin P.,
Alonso Estella M.
Publication year - 2000
Publication title -
liver transplantation
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.814
H-Index - 150
eISSN - 1527-6473
pISSN - 1527-6465
DOI - 10.1053/lv.2000.6139
Subject(s) - medicine , liver transplantation , quality of life (healthcare) , population , transplantation , pediatrics , disease , liver disease , physical therapy , nursing , environmental health
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.