The Journal of Pediatrics
Volume 156, Issue 4 , Pages 639-644 , April 2010

Health-Related Quality of Life Across Pediatric Chronic Conditions

  • Lisa M. Ingerski, PhD

      Affiliations

    • Center for the Promotion of Treatment Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
    • ,
  • Avani C. Modi, PhD

      Affiliations

    • Center for the Promotion of Treatment Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
    • Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH
    • ,
  • Korey K. Hood, PhD

      Affiliations

    • Center for the Promotion of Treatment Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
    • Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH
    • ,
  • Ahna L. Pai, PhD

      Affiliations

    • Center for the Promotion of Treatment Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
    • Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH
    • ,
  • Meg Zeller, PhD

      Affiliations

    • Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
    • Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH
    • ,
  • Carrie Piazza-Waggoner, PhD

      Affiliations

    • Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
    • Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH
    • ,
  • Kimberly A. Driscoll, PhD

      Affiliations

    • Department of Medical Humanities and Social Sciences, Florida State University College of Medicine, Tallahassee, FL
    • ,
  • Marc E. Rothenberg, MD, PhD

      Affiliations

    • Division of Allergy and Immunology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
    • Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH
    • ,
  • James Franciosi, MD

      Affiliations

    • Division of Gastroenterology, Hepatology, and Nutrition, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
    • Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH
    • ,
  • Kevin A. Hommel, PhD

      Affiliations

    • Center for the Promotion of Treatment Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
    • Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH
    • Corresponding Author InformationReprint requests: Dr Kevin A. Hommel, Center for the Promotion of Treatment Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, MLC 7039, Cincinnati, OH 45229-3039.

Received 22 June 2009 ,Revised 30 September 2009 ,Accepted 4 November 2009.

References 

  1. Newacheck PW, Strickland B, Shonkoff JP, Perrin JM, McPherson M, McManus M, et al. An epidemiologic profile of children with special health care needs. Pediatrics. 1998;102:117–123
  2. Resnikoff JR, Conrad DJ. Recent advances in the understanding and treatment of cystic fibrosis. Curr Opin Pulm Med. 1998;4:130–134
  3. Food and Drug Administration. Guidance for Industry. Patient-reported outcome measures: use in medical product development to support labeling claims. 2006 [March 30, 2009]; Available from: http://www.fda.gov/cder/guidance/5460dft.pdf.
  4. Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Dis Child. 2001;84:205–211
  5. Schor EL. The future pediatrician: promoting children's health and development. J Pediatr. 2007;151:S11–S16
  6. Rolland JS. Toward a psychosocial typology of chronic and life-threatening illness. Family Syst Med. 1984;2:245–262
  7. Eiser C, Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res. 2001;10:347–357
  8. Cremeens J, Eiser C, Blades M. Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes. 2006;4:1–8
  9. Upton P, Lawford J, Eiser C. Parent-child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res. 2008;17:895–913
  10. Leslie L, Rappo P, Abelson H, Jenkins RR, Sewall SR, Chesney RW, et al. Final report of the FOPE II pediatric generalists of the future workgroup. Pediatrics. 2000;106:1199–1223
  11. Wise PH. The future pediatrician: the challenge of chronic illness. J Pediatr. 2007;151:S6–10
  12. Beattie PE, Lewis-Jones MS. A comparative study of impairment of quality of life in children with skin disease and children with other chronic childhood diseases. Br J Dermatol. 2006;155:145–151
  13. Varni J, Limbers C, Burwinkle T. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 generic core scales. Health Qual Life Outcomes. 2007;5:43
  14. Schwimmer JB, Burwinkle TM, Varni JW. Health-related quality of life of severely obese children and adolescents. JAMA. 2003;289:1813–1819
  15. Karwowski CA, Keljo D, Szigethy E. Strategies to improve quality of life in adolescents with inflammatory bowel disease. Inflamm Bowel Dis. 2009;Epub ahead of print
  16. Anthony SJ, Hebert D, Todd L, Korus M, Langlois V, Pool R, et al. Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation. Pediatr Transplant. 2009;Epub ahead of print
  17. Varni J, Seid M, Kurtin P. The PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory Version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;39:800–812
  18. Varni J, Burwinkle T, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr. 2003;6:329–341
  19. Varni J, Limbers C, Burwinkle T. Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL 4.0 generic core scales. Health Qual Life Outcomes. 2007;5(2):1–10
  20. de Wit M, Delemarre-van de Waal HA, Pouwer F, Gemke RJ, Snoek FJ. Monitoring health related quality of life in adolescents with diabetes: a review of measures. Arch Dis Child. 2007;92:434–439
  21. Quittner AL. Measurement of quality of life in cystic fibrosis. Curr Opin Pulm Med. 1998;4:326–331
  22. Limbers CA, Newman DA, Varni JW. Factorial invariance of child self-report across healthy and chronic health condition groups: a confirmatory factor analysis utilizing the PedsQL 4.0 generic core scales. J Pediatr Psychol. 2008;33:630–639
  23. Kugathasan S, Judd RH, Hoffmann RG, Heikenen J, Telega G, Khan F, et al. Epidemiologic and clinical characteristics of children with newly diagnosed inflammatory bowel disease in Wisconsin: a statewide population-based study. J Pediatr. 2003;143:525–531
  24. Hommel KA, Davis CM, Baldassano RN. Medication adherence and quality of life in pediatric inflammatory bowel disease. J Pediatr Psychol. 2008;33:867–874
  25. Zeller MH, Reiter-Purtill J, Ramey C. Negative peer perceptions of obese children in the classroom environment. Obesity. 2008;16:755–762
  26. Gray WN, Janicke DM, Ingerski LM, Silverstein JH. The impact of peer victimization, parent distress and child depression on barrier formation and physical activity in overweight youth. J Dev Behav Pediatr. 2008;29:26–33
  27. Storch EA, Milsom VA, DeBraganza N, Lewin AB, Geffken GR, Silverstein JH. Peer victimization, psychosocial adjustment, and physical activity in overweight and at-risk-for-overweight youth. J Pediatr Psychol. 2007;32:80–89
  28. Modi AC, Guilfoyle SM, Zeller MH. Impaired health-related quality of life in caregivers of youth seeking obesity treatment. J Pediatr Psychol. 2009;34:147–155
  29. Hatzmann J, Heymans H, Ferrer-i-Carbonell A, van Praag B, Grootenhuis MA. Hidden consequences of success in pediatrics: parental health-related quality of life-results from the care project. Pediatrics. 2008;122:e1030–e1038
  30. Goldbeck L, Melches J. Quality of life in families with congenital heart disease. Qual Life Res. 2005;14:1915–1924
  31. Berra S, Tebe C, Erhart M, Ravens-Sieberer U, Auquier P, Detmar S, et al. Correlates of use of health care services by children and adolescents from 11 European countries. Med Care. 2009;47:161–167
  32. Varni JW. Measuring pediatric health-related quality of life from the perspective of children and their parents. Midwest Conference on Pediatric Psychology; April 2009; Kansas City, MO.

 Funded by NIDDK K23 DK079037, PHS Grant P30 DK 078392, Procter and Gamble Pharmaceuticals Prometheus Laboratories, Inc., to K.A.H.; K23 DK60031, Clinical Research Feasibility Funds, Cincinnati Children's Hospital Medical Center, General Clinical Research Center, US Public Health Service, General Clinical Research Centers Program, National Center for Research Resources/NIH M01 RR08094 to M.Z.; NIH K23 HD057333 to A.C.M.; NIH T32 DK63929 to A.C.M., C.P.W., and K.D.; and NIDDK K23 DK 073340 to K.K.H. The authors declare no conflicts of interest.

PII: S0022-3476(09)01115-9

doi: 10.1016/j.jpeds.2009.11.008

The Journal of Pediatrics
Volume 156, Issue 4 , Pages 639-644 , April 2010

Article Tools

* Image Usage & Resolution