title: Development and validation of the pediatric liver transplantation quality of life: a disease-specific quality of life measure for pediatric liver transplant recipients.
abstract: OBJECTIVE
  To develop and validate a Pediatric Liver Transplantation Quality of Life (PeLTQL) questionnaire via an international multicenter collaboration.
  
  
  METHODS
  Item generation with 146 child and/or parent interviews (92 pediatric liver transplantation [LT] recipients) and 3 focus groups generated over 300 items. An item reduction questionnaire with 76 questions was completed by 320 participants (212 pediatric LT recipients).
  
  
  RESULTS
  Frequency-importance product ranking, questionnaire formatting, and pre-testing resulted in a 26-item PeLTQL questionnaire. Factor analysis identified 3 domains: future health, coping and adjustment, and social-emotional. The validation phase was completed by 133 (46% male) LT recipients (aged 8-18 years). Internal consistency (Cronbach α = 0.86) and test-retest reliability (intraclass correlation coefficient = 0.85) were excellent. Mean patient PeLTQL score was 69.54 ± 13.06. Construct validity with validated tools identified significant correlations between mean PeLTQL scores and (1) Pediatric Quality of Life Inventory generic (r = 0.64, P < .001); (2) Pediatric Quality of Life Inventory transplant (r = 0.73, P < .001); and (3) Screen for Child Anxiety Related Disorders (r = -0.57, P < .001) scores. Only 17/3458 (0.5%) questions were left blank. A Flesch-Kincaid grade level of 5.4 was calculated as a measure of the PeLTQL readability statistic.
  
  
  CONCLUSIONS
  The PeLTQL is a valid and reliable novel 26-item disease-specific health related quality of life instrument for LT recipients aged 8-18 years. Low PeLTQL scores can identify patients at risk for childhood anxiety and depression. The tool is now ready for broad use in both clinical practice and clinical interventional trials.
authors: Sick Kids Transplant Center, The Hospital for Sick Children and The University of Toronto, Toronto, Ontario, Canada.
authors: Vicky
authors: V
authors: Ng
authors: Social Work, University of Calgary, Calgary, Alberta, Canada.
authors: David
authors: D
authors: Nicholas
authors: Pediatric Liver Center, Kings College London and King's College Hospital, London, United Kingdom.
authors: Anil
authors: A
authors: Dhawan
authors: Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
authors: Nada
authors: N
authors: Yazigi
authors: Pediatrics, Royal Children's Hospital, Brisbane, Queensland, Australia.
authors: Looi
authors: L
authors: Ee
authors: Pediatrics, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
authors: Michael
authors: M
authors: Stormon
authors: Pediatrics, Stollery Children's Hospital, Edmonton, Alberta, Canada.
authors: Susan
authors: S
authors: Gilmour
authors: Pediatrics, British Columbia Children's Hospital, Vancouver, British Columbia, Canada.
authors: Rick
authors: R
authors: Schreiber
authors: Cancer Clinical Trials Unit, University College London Hospital, London, United Kingdom.
authors: Rachel
authors: R
authors: Taylor
authors: Pediatrics, Dalhousie University, IWK Health Centre, Halifax, Nova Scotia, Canada. Electronic address: arotley@dal.ca.
authors: Anthony
authors: A
authors: Otley
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D016031:Liver Transplantation; D008297:Male; D011788:Quality of Life; D011795:Surveys and Questionnaires