title: Health status in young adults two decades after pediatric liver transplantation.
abstract: We conducted a cross-sectional study of patients who underwent pediatric liver transplant (LT) between 1988 and 1992 to evaluate long-term health status. Survivors completed socio-demographic, medical and Health-Related Quality of Life (HRQOL) surveys by mail including the SF-36v2, PedsQL™4.0 Generic Core Scale, PedsQL™ Cognitive Functioning Scale and PedsQL™3.0 Transplant Module. SF-36 scores were converted to SF6D-based utilities and risk factors for lower outcomes were assessed. Eighty-five of 171 patients had survived. Fifty-six were contacted with a response rate of 66%. Median age at LT was 0.86 years (IQR 0.58-3.0) and 64.3% had biliary atresia. Mean age at survey was 23.0 ± 4.4 years: 62% attended college, 68% lived with parents and 80% of those over 23 were employed. Patient health utilities were lower than norms (0.75 ± 0.12 vs. 0.82 ± 0.18, p < 0.01) and correlated with unemployment (p < 0.042), hospitalizations (p < 0.005) and lower education level (p < 0.016). Lower PedsQL™3.0 Transplant Module and PedsQL™ 4.0 Generic Core Scale scores correlated with unemployment (p = 0.006, p = 0.009) and hospitalizations (p = 0.006, p = 0.02). Pediatric transplant recipients who survive to adulthood have lower physical HRQOL, measurable transplant-related disability and lower health utility. Transplantation is life saving; however, physical and psychological sequelae continue to affect health status up to two decades later.
authors.affiliation: Department of Pediatrics, Northwestern University, Feinberg School of Medicine, Chicago, IL, USA. smohammad@childrensmemorial.org
authors.forename: S
authors.initials: S
authors.lastname: Mohammad
authors.forename: L
authors.initials: L
authors.lastname: Hormaza
authors.forename: K
authors.initials: K
authors.lastname: Neighbors
authors.forename: P
authors.initials: P
authors.lastname: Boone
authors.forename: M
authors.initials: M
authors.lastname: Tierney
authors.forename: R K
authors.initials: RK
authors.lastname: Azzam
authors.forename: Z
authors.initials: Z
authors.lastname: Butt
authors.forename: E M
authors.initials: EM
authors.lastname: Alonso
mesh_terms: D000293:Adolescent; D000328:Adult; D003430:Cross-Sectional Studies; D005260:Female; D006304:Health Status; D006801:Humans; D007166:Immunosuppressive Agents / Q000008:administration & dosage*; D016031:Liver Transplantation; D008297:Male; D011788:Quality of Life; D011795:Surveys and Questionnaires; D055815:Young Adult
chemical_list: D007166:Immunosuppressive Agents