Health Status of Children Alive 10 Years after Pediatric Liver Transplantation Performed in the US and Canada: Report of the Studies of Pediatric Liver Transplantation Experience

Ng, V. L.; Alonso, E. M.; Bucuvalas, J. C.; Cohen, G.; Limbers, C. A.; Varni, J. W.; Mazariegos, G.; Magee, J.; McDiarmid, S. V.; Anand, R.

J Pediatr. 2011 Dec 24; 160(5):820-826 e3

Abstract

OBJECTIVES: To determine clinical and health-related quality of life outcomes, and to derive an "ideal" composite profile of children alive 10 years after pediatric liver transplantation (LT) performed in the US and Canada. STUDY DESIGN: This was a multicenter cross-sectional analysis characterizing patients enrolled in the Studies of Pediatric Liver Transplantation database registry who have survived >10 years from LT. RESULTS: A total of 167 10-year survivors were identified, all of whom received daily immunosuppression therapy. Comorbidities associated with the post-LT course included post-transplantation lymphoproliferative disease (in 5% of patients), renal dysfunction (9%), and impaired linear growth (23%). Health-related quality of life, as assessed by the PedsQL 4.0 Generic Core Scales, revealed lower patient self-reported total scale scores for 10-year survivors compared with matched healthy children (77.2+/-12.9 vs 84.9+/-11.7; P<.001). At 10 years post-LT, only 32% of patients achieved an ideal profile of a first allograft stable on immunosuppression monotherapy, normal growth, and absence of common immunosuppression-induced sequelae. CONCLUSION: Success after pediatric LT has moved beyond patient survival. Availability of an ideal composite profile at follow-up provides opportunities for patients, families, and healthcare providers to identify broader sets of outcomes at earlier stages, ultimately contributing to improved outcomes after pediatric LT.

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