We conducted a cross-sectional study of patients who underwent pediatric liver transplant between 1988 to1992 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 yrs (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 versus 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, measureable 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.

Thalidomide is a potentially effective rescue therapy for severe refractory CD in children who fail to respond to anti-TNF medications.

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