Health-related quality of life in long-term survivors of pediatric liver transplantation

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 an d 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 surv iving 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 U tilities Index Mark II (HUI2), and chronic disease-specific medical disabil ity was measured by the LTDS. HUI2 results were compared with a reference p opulation, LTDS scores were compared with utility scores and patient surviv al 3 years later. Ninety percent of the study patients had functional defic its compared with 50% of controls, Functional impairment was typically mild . The resulting mean utility score, 0.86 +/- 0.13 (0 = dead, 1 = perfect he alth), was significantly less than that of the reference population, 0.95 /- 0.07 (P < .001), LTDS scores ranged from 0 (no disability) to 6 (moderat e disability). Seventy-one percent of the children had mild disability (sco res 0 to 3), and 29% had moderate disability (scores 4 to 6), LTDS scores d id not correlate with utility scores but were predictive of survival. The m ajority of pediatric liver transplant recipients have mild functional defic its. Their utility scores reflected a high level of HRQOL but were signific antly less than those of a reference population. The majority also had mild medical disability, predominantly delayed growth. Medical disability did n ot correlate with HRQOL but predicted survival 3 years later.