Quality of Life Research

, Volume 14, Issue 2, pp 395–405 | Cite as

A two-year prospective study of the health-related quality of life of children with chronic illness – the parents’ perspective

  • M. G. Sawyer
  • K. E. Reynolds
  • J. J. Couper
  • D. J. French
  • D. Kennedy
  • J. Martin
  • R. Staugas
  • P. A. Baghurst
Article

Abstract

The aim of this study was to assess prospectively changes in the health-related quality of life (HRQL) of children and adolescents with diabetes, asthma or cystic fibrosis (CF). One hundred and twenty-two parents of children aged 10–16 years with asthma, diabetes, or CF were recruited from specialist paediatric clinics. Parents described their children’s HRQL using the Child Health Questionnaire (PF98) at baseline, 6, 12, 18 and 24 months post-baseline. They reported that the general health of children with CF was significantly worse than that of children with asthma and diabetes at baseline. In other domains there were few differences between the HRQL of children in the three groups. In several domains, the HRQL of children with asthma or diabetes improved over the 2years of the study. This improvement was less evident for children with CF.

Keywords

Adolescents Children Chronic illness Health-related quality of life Parents Prospective 

Abbreviations

HRQL

health–related quality of life

CF

cystic fibrosis

CHQ

Child Health Questionnaire

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  1. Power , TJ, Dupaul, GJ, Shapiro, ES 2003Promoting Children’s Health. Integrating School, Family and Community.The Guilford PressNew YorkGoogle Scholar
  2. Robinson, MJ, Roberton, DM. 2003Practical Paediatrics 5th ed.Churchill LivingstoneEdinburghGoogle Scholar
  3. Schipper, H, Clinch, JJ, Olweny, CLM. 1996

    Quality of life studies: Definitions and conceptual issues

    Spilker, B eds. Quality of Life and Pharmacoeconomics in Clinical Trials. 2nd ed. Lippincott-RavenNew York1123
    Google Scholar
  4. Juniper, EF, Guyatt, GH, Feeney, D, Griffith, LE, Ferrie, PJ 1997Minimum skills required by children to complete health-related quality of life instruments for asthma: comparison of measurement properties.Eur Respir J1022852294Google Scholar
  5. Landgraf , JM, Abetz, L, Ware , JE 1996Child Health Questionnaire (CHQ): A User’s Manual.The Health Institute, New England Medical CentreBoston, MAGoogle Scholar
  6. Varni, JW, Seid, M, Kurtin, PS 2001The PedsQL 4.0: Reliability and validity of Pediatric Quality of Life Inventory Version 4.0 Generic Core Scales in healthy and patient populations.Med Care39800812Google Scholar
  7. Wallander, JL, Varni, JW 1998Effects of pediatric chronic physical disorders on child and family adjustment.J Child Psychol Psychiatry392946Google Scholar
  8. Stein, EK, Jessop, DJ 1989What diagnosis does not tell: The case for a noncategorical approach to chronic illness in childhood.Soc Sci Med29769778Google Scholar
  9. Eiser, C, Morse, R 2001Can parents rate their child’s health-related quality of life?Results of a systematic review. Qual Life Res10347357Google Scholar
  10. Sawyer MG, Reynolds KE, Couper JJ, et al. Health-related quality of life of children with chronic illness–A two year prospective study. Qual Life Res (in press).Google Scholar
  11. Sawyer, MG, Antoniou, G, Toogood, I, Rice, M 1997Childhood cancer: A two-year prospective study of the psychological adjustment of children and parents. J Am Acad Child Adolesc Psychiatry361736Google Scholar
  12. Sawyer M, Arney F, Baghurst P, et al. The Mental Health of Young People in Australia: Child and Adolescent Component of the National Survey of Mental Health and Well-Being. Mental Health and Special Programs Branch, Commonwealth Department of Health and Aged Care. Australia. www.mentalhealth.gov.au.Google Scholar
  13. Rosier, MJ, Bishop, J, Nolan, R, Robertson, CF, Carlin, JB, Phelan, PD 1994Measurement of functional severity of asthma in children.Am J Respir Crit Care Med14914341441Google Scholar
  14. Cohen, J. 1988Statistical Power Analysis for the Behavioral Sciences 2nd ed.Lawrence ErlbaumLondonGoogle Scholar
  15. Britto, MT, Kotagal, UR, Chenier, T, Tsevat, J, Atherton, HD, Wilmott, RW 2004Differences between adolescents’ and parents’ reports of health-related quality of life in cystic fibrosis.Pediatr Pulm37165171Google Scholar
  16. Lydick, E, Epstein, RS 1993Interpretation of quality of life changes.Qual Life Res2221226CrossRefPubMedGoogle Scholar
  17. Varni, JW, Seid, M, Kurtin, PS 2001The PedsQLTM 4.0: Reliability and validity of the Pediatrc Quality of Life InventoryTMVersion 4.0 Generic Core Scales in healthy and patient populations.Med Care39800812Google Scholar

Copyright information

© Springer 2005

Authors and Affiliations

  • M. G. Sawyer
    • 1
  • K. E. Reynolds
    • 1
  • J. J. Couper
    • 2
  • D. J. French
    • 3
  • D. Kennedy
    • 2
  • J. Martin
    • 4
  • R. Staugas
    • 4
  • P. A. Baghurst
    • 5
  1. 1.Research and Evaluation Unit, and Department of PaediatricsWomen’s and Children’s Hospital, University of AdelaideNorth AdelaideAustralia
  2. 2.Department of PaediatricsUniversity of AdelaideAustralia
  3. 3.Department of PsychologyUniversity of Western AustraliaAustralia
  4. 4.Department of Pulmonary MedicineWomen’s and Children’s HospitalAustralia
  5. 5.Public Health Research Unit and Department of Paediatrics,Women’s and Children’s Hospital, University of AdelaideAustralia

Personalised recommendations