title: Health-related quality of life in long-term survivors of paediatric liver transplantation.
abstract: BACKGROUND
  Long-term survival after paediatric liver transplantation is now the rule rather than the exception. Improving long-term outcomes after transplantation must consider not only the quantity but also the quality of life years restored.
  
  
  OBJECTIVE
  To characterize health-related quality of life (HRQOL) of LT recipients ≥15 years after paediatric LT.
  
  
  METHODS
  Recipients of a paediatric LT performed before December 1996 in a single institution with continuous follow-up at either the paediatric or adult partner centre were identified. Patients with severe developmental or neurological impairment were excluded. HRQOL was assessed using the Pediatric Quality of Life Inventory 4.0, the Medical Outcomes Study Short Form-36 version 2 and the Pediatric Liver Transplant Quality of Life Tool.
  
  
  RESULTS
  A total of 27 (67% male) subjects (mean age 24.3±6.7 years [median 23.2 years; range 16.6 to 40.3 years]) participated. The median age at transplant was 1.7 years (range 0.5 to 17.0 years). Seven (26%) participants underwent retransplantation. Seventeen (63%) participants were engaged in full-time work/study. Mean Short Form-36 version 2 scores included physical (49.6±11.1) and mental (45.3±12.5) subscale scores. The mean score for the disease-specific quality of life tool for paediatric liver transplant recipients (the Pediatric Liver Transplant Quality of Life Tool) was 64.70±15.2. The physical health of the young adults strongly correlated with level of involvement in work/study (r=0.803; P<0.05).
  
  
  CONCLUSIONS
  The self-reported HRQOL of participants <18 years of age was comparable with a standardized healthy population. In contrast, participants between 18 and 25 years of age had HRQOL scores that were more similar to a group with chronic illness. Participants engaged in full-time work/study experienced enhanced physical health.
authors.affiliation: Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, University of Toronto; ; Multi-Organ Transplant Program, Toronto General Hospital, University Health Network, Toronto, Ontario;
authors.forename: Stacey V
authors.initials: SV
authors.lastname: Konidis
authors.affiliation: Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, University of Toronto;
authors.forename: Alexander
authors.initials: A
authors.lastname: Hrycko
authors.affiliation: Department of Gastroenterology, John Hunter Children's Hospital, Newcastle, New South Wales, Australia;
authors.forename: Scott
authors.initials: S
authors.lastname: Nightingale
authors.affiliation: Multi-Organ Transplant Program, Toronto General Hospital, University Health Network, Toronto, Ontario;
authors.forename: Eberhard
authors.initials: E
authors.lastname: Renner
authors.affiliation: Multi-Organ Transplant Program, Toronto General Hospital, University Health Network, Toronto, Ontario;
authors.forename: Leslie
authors.initials: L
authors.lastname: Lilly
authors.affiliation: Multi-Organ Transplant Institute, Ochsner Clinic Foundation, Ochsner Medical Center, New Orleans, Louisiana, USA.
authors.forename: George
authors.initials: G
authors.lastname: Therapondos
authors.affiliation: Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, University of Toronto;
authors.forename: Ann
authors.initials: A
authors.lastname: Fu
authors.affiliation: Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, University of Toronto;
authors.forename: Yaron
authors.initials: Y
authors.lastname: Avitzur
authors.affiliation: Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, University of Toronto;
authors.forename: Vicky Lee
authors.initials: VL
authors.lastname: Ng
keywords: Health; Liver transplant recipients; Quality of life; Well-being