title: 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.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: University of Toronto, Toronto, Ontario, Canada.
authors.forename: Vicky L
authors.initials: VL
authors.lastname: Ng
authors.forename: Estella M
authors.initials: EM
authors.lastname: Alonso
authors.forename: John C
authors.initials: JC
authors.lastname: Bucuvalas
authors.forename: Geoff
authors.initials: G
authors.lastname: Cohen
authors.forename: Christine A
authors.initials: CA
authors.lastname: Limbers
authors.forename: James W
authors.initials: JW
authors.lastname: Varni
authors.forename: George
authors.initials: G
authors.lastname: Mazariegos
authors.forename: John
authors.initials: J
authors.lastname: Magee
authors.forename: Susan V
authors.initials: SV
authors.lastname: McDiarmid
authors.forename: Ravinder
authors.initials: R
authors.lastname: Anand
mesh_terms: D000293:Adolescent; D017677:Age Distribution; D002648:Child; D002669:Child Welfare; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D016208:Databases, Factual; D005260:Female; D005500:Follow-Up Studies; D006084:Graft Rejection; D006085:Graft Survival; D006304:Health Status; D006801:Humans; D015994:Incidence; D007223:Infant; D017093:Liver Failure / Q000175:diagnosis / Q000601:surgery; D016031:Liver Transplantation / Q000276:immunology / Q000379:methods / Q000401:mortality*; D008297:Male; D009864:Ontario; D011183:Postoperative Complications / Q000175:diagnosis / Q000401:mortality; D011788:Quality of Life; D017678:Sex Distribution; D017741:Survivors / Q000706:statistics & numerical data*; D013997:Time Factors; D014181:Transplantation Immunology; D016896:Treatment Outcome; D014481:United States