The Journal of Pediatrics
Volume 156, Issue 2 , Pages 270-276.e1, February 2010

Cross-Sectional Analysis of Health-Related Quality of Life in Pediatric Liver Transplant Recipients

  • Estella M. Alonso, MD

      Affiliations

    • Department of Pediatrics, Children's Memorial Hospital, Chicago, IL
    • Corresponding Author InformationReprints not available. Correspondence to Dr Estella M. Alonso, Children's Memorial Hospital, 2300 Children's Plaza, Box 65, Chicago, IL 60614.
    • ,
  • Christine A. Limbers, MS

      Affiliations

    • Department of Psychology, Texas A&M University, College Station, TX
    • ,
  • Katie Neighbors, MPH

      Affiliations

    • Department of Pediatrics, Children's Memorial Hospital, Chicago, IL
    • ,
  • Karen Martz, MS

      Affiliations

    • The EMMES Corporation, Rockville, MD
    • ,
  • John C. Bucuvalas, MD

      Affiliations

    • Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
    • ,
  • Thomas Webb, MD, MSc

      Affiliations

    • Department of General Internal Medicine, University of Cincinnati College of Medicine, Cincinnati, OH
    • ,
  • James W. Varni, PhD

      Affiliations

    • Department of Pediatrics and Landscape Architecture and Urban Planning, Texas A&M University, College Station, TX
    • ,
  • Studies of Pediatric Liver Transplantation (SPLIT) Functional Outcomes Group (FOG)

      Affiliations

    • Additional members and hospitals of the Studies of Pediatric Liver Transplantation Functional Outcomes Group are available at www.jpeds.com (Appendix).

Received 26 February 2009; received in revised form 12 June 2009; accepted 26 August 2009. published online 21 October 2009.

Objective

To investigate the distribution of health-related quality of life in pediatric liver transplant recipients compared with a normative population.

Study design

This cross-sectional, multicenter study was conducted at select centers. Patients between 2 and 18 years of age, surviving liver transplantation by at least 12 months, were eligible. Parent/guardian fluency in English or Spanish was required. Children ≥8 years and parents of all children completed the age-appropriate versions of the PedsQL 4.0 (Mapi Research Institute, Lyon, France). Scores were compared with a sample of healthy children (n = 3911) matched by age group, sex, and race/ethnicity and with a sample of pediatric patients with cancer receiving chemotherapy and/or radiation.

Results

Participants included 65% (873/1339) of eligible patients. Mean age was 8.17 ± 4.43 years, and 55% were female. The total and subscale scores of PedsQL 4.0 were lower than in healthy children (P < .001), with effect sizes for self-report ranging from −0.25 for Emotional Functioning to −0.68 for School Functioning. Patients and their parents reported better physical functioning than patients with cancer but similar social and school functioning. Correlations between parent and self-reports were in the moderate agreement range.

Conclusions

Pediatric liver transplant recipients and their parents report lower health-related quality of life than control subjects with some domains equal to children receiving cancer therapy.

HRQOL, Health-related quality of life, ICC, Intraclass correlations, SAPS, School Attendance and Performance Survey, SCHIP, State Children's Health Insurance Program, SPLIT, Studies of Pediatric Liver Transplantation

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 Supported by the National Institute of Child Health and Human Development (grant No. R01 HD045694) and the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institutes of Health (grant No. U01 DK061693). The sponsoring agency was not involved in the collection, analysis, or interpretation of data or the generation of the report. E.M.A. received salary support through the grant mechanism, but no honorarium or other form of payment was given. Dr. Varni holds the copyright and the trademark for the PedsQL (Mapi Research Institute, Lyon, France) and receives financial compensation from the Mapi Research Trust, which is a nonprofit research institute that charges distribution fees to for-profit companies that use the Pediatric Quality of Life Inventory (PedsQL).

PII: S0022-3476(09)00873-7

doi:10.1016/j.jpeds.2009.08.048

The Journal of Pediatrics
Volume 156, Issue 2 , Pages 270-276.e1, February 2010

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