Tijdschrift voor kindergeneeskunde

, Volume 71, Issue 3, pp 142–148 | Cite as

Het meten van de gezondheidsgerelateerde kwaliteit van leven van kinderen met een chronische ziekte

  • H. M. Koopman
  • J. Bruil
  • S. B. Detmar
  • R. M. Baars
  • J. M. Wit


Aan de hand van zeven vragen: Wat is gezondheidsgerelateerde kwaliteit van leven (GKvL)? Hoe kan GKvL gemeten worden? Aan welke voorwaarden moeten GKvL-instrumenten voldoen? Voor welke doeleinden worden GKvL-instrumenten gebruikt? Wie vult de GKvL-vragenlijsten in? Wat kan de kinderarts met de GKvL-uitkomsten? Hoe ziet GKvL-onderzoek er in de toekomst uit? wordt een overzicht gegeven van de ontwikkeling en het gebruik van gezondheidsgerelateerde kwaliteit-van-leven instrumenten binnen de kindergeneeskunde. Negen generieke GKvL-instrumenten met zowel een ouder- als kindversie en Nederlandse normen worden vermeld. In de toekomst zullen naast toenemende internationale samenwerking de elektronische GKvL-vragenlijstafname, -verwerking en -analyse een steeds belangrijker plaats in de kindergeneeskundige zorg gaan innemen.


With the help of seven questions: What is health related quality of life (HRQoL)? How can HRQoL be measured? What conditions do HRQoL instruments need to meet? For what purpose can HRQoL instruments be used? Who completes the questionnaires? In what way can paediatricians use the HRQoL results? What does HRQoL research look like in future? an overview is given of the development and use of health related quality of life instruments for paediatric practice. Nine generic instruments with parent as well as child versions and Dutch norm results are presented. In the future an expanding international collaboration and computer assisted HRQoL assessment, assimilation and analyses will take up an increasingly important position in paediatric care.


  1. Patrick DL, Bergner M. Measurement of health status in the 1990s. Annu Rev Public Health. 1990;11:165-83.CrossRefPubMedGoogle Scholar
  2. Spieth LE, Harris CV. Assessment of health-related quality of life in children and adolescents: an integrative review. J Pediatr Psychol 1996;21(2):175-93.CrossRefPubMedGoogle Scholar
  3. Wood-Dauphinee S. Assessing quality of life in clinical research: from where have we come and where are we going? J Clin Epidemiol 1999;52(4):355-63.CrossRefPubMedGoogle Scholar
  4. Hudson MM, Tyc VL, Jayawardene DA, et al. Feasibility of implementing health promotion interventions to improve health-related quality of life. Int J Cancer Suppl 1999;12:138-42.CrossRefPubMedGoogle Scholar
  5. Veen S, Fekkes M, Koopman HM, et al. Quality of life in preschool children born preterm. Dev Med Child Neurol 2001;43(7):460-5.CrossRefPubMedGoogle Scholar
  6. le Coq EM, Boeke AJ, Bezemer PD, et al. Clinimetric properties of a parent report on their offspring's quality of life. J Clin Epidemiol 2000;53(2):139-46.CrossRefPubMedGoogle Scholar
  7. Ware JE, Jr., Kemp JP, Buchner DA, et al. The responsiveness of disease-specific and generic health measures to changes in the severity of asthma among adults. Qual Life Res 1998;7(3):235-44.CrossRefPubMedGoogle Scholar
  8. Loonen HJ, Grootenhuis MA, Last BF, et al. Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease-specific questionnaire. Acta Paediatr 2002;91(3):348-54.CrossRefPubMedGoogle Scholar
  9. Lewis CC, Pantell RH, Kieckhefer GM. Assessment of children's health status. Field test of new approaches. Med Care. 1989;27(3 Suppl):554-65.Google Scholar
  10. Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Dis Child 2001;84(3):205-11.CrossRefPubMedGoogle Scholar
  11. Raat H, Bonsel GJ, Essink-Bot ML, et al. Reliability and validity of comprehensive health status measures in children: The Child Health Questionnaire in relation to the Health Utilities Index. J Clin Epidemiol 2002;55(1):67-76.CrossRefPubMedGoogle Scholar
  12. Annett RD. Assessment of health status and quality of life outcomes for children with asthma. J Allergy Clin Immunol 2001;107(5 Suppl):S473-81.CrossRefPubMedGoogle Scholar
  13. Jessop DJ, Riessman CK, Stein RE. Chronic childhood illness and maternal mental health. J Dev Behav Pediatr 1988;9(3):147-56.CrossRefPubMedGoogle Scholar
  14. le Coq EM, Colland VT, Boeke AJ, et al. Reproducibility, construct validity, and responsiveness of the “How Are You?” (HAY), a self-report quality of life questionnaire for children with asthma. J Asthma 2000;37(1):43-58.CrossRefPubMedGoogle Scholar
  15. Furlong WJ, Feeny DH, Torrance GW, Barr RD. The Health Utilities Index (HUI) system for assessing health-related quality of life in clinical studies. Ann Med 2001;33(5):375-84.CrossRefPubMedGoogle Scholar
  16. Ravens-Sieberer U, Bullinger M. Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Qual Life Res 1998;7(5):399-407.CrossRefPubMedGoogle Scholar
  17. Varni JW, Seid M, Kurtin PS. 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(8):800-12.CrossRefPubMedGoogle Scholar
  18. Vogels T, Verrips GH, Verloove-Vanhorick SP, et al. Measuring health-related quality of life in children: the development of the TACQOL parent form. Qual Life Res 1998;7(5):457-65.CrossRefPubMedGoogle Scholar
  19. Fekkes M, Theunissen NC, Brugman E, et al. Development and psychometric evaluation of the TAPQOL: a health-related quality of life instrument for 1-5-year-old children. Qual Life Res 2000;9(8):961-72.CrossRefPubMedGoogle Scholar
  20. Bruil J. Development of a quality of life instrument for children with a chronic illness. Universiteit van Leiden, 1999.Google Scholar
  21. Juniper EF, Guyatt GH, Feeny DH, et al. Measuring quality of life in children with asthma. Qual Life Res 1996;5(1):35-46.CrossRefPubMedGoogle Scholar
  22. Langeveld JH, Koot HM, Loonen MC, et al. A quality of life instrument for adolescents with chronic headache. Cephalalgia 1996;16(3):183-96.CrossRefPubMedGoogle Scholar
  23. Bullinger M, Schmidt S, Petersen C. Assessing quality of life of children with chronic health conditions and disabilities: a European approach. Int J Rehabil Res 2002;25(3):197-206.CrossRefPubMedGoogle Scholar
  24. Hyland ME. Recommendations from quality of life scales are not simple. BMJ 2002;325(7364):599b.CrossRefGoogle Scholar
  25. Loonen HJ, Derkx BH, Koopman HM, Heymans HS. Are parents able to rate the symptoms and quality of life of their offspring with IBD? Inflamm Bowel Dis 2002;8(4):270-6.CrossRefPubMedGoogle Scholar
  26. Theunissen NC, Vogels TG, Koopman HM, et al. The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 1998;7(5):387-97.CrossRefPubMedGoogle Scholar
  27. Cella D, Bullinger M, Scott C, Barofsky I. Group vs individual approaches to understanding the clinical significance of differences or changes in quality of life. Mayo Clin Proc 2002;77(4):384-92.CrossRefPubMedGoogle Scholar
  28. Grootenhuis MA, Last BF. Adjustment and coping by parents of children with cancer: a review of the literature. Support Care Cancer 1997;5(6):466-84.CrossRefPubMedGoogle Scholar
  29. Drotar D, Lemanek K. Steps toward a clinically relevant science of interventions in pediatric settings: introduction to the special issue. J Pediatr Psychol 2001;26(7):385-94.CrossRefPubMedGoogle Scholar
  30. Detmar SB, Aaronson NK. Quality of life assessment in daily clinical oncology practice: a feasibility study. Eur J Cancer 1998;34(8):1181-6.CrossRefPubMedGoogle Scholar
  31. Kazis LE, Anderson JJ, Meenan RF. Health status information in clinical practice: the development and testing of patient profile reports. J Rheumatol 1988;15(2):338-44.PubMedGoogle Scholar
  32. Buxton J, White M, Osoba D. Patients' experiences using a computerized program with a touch-sensitive video monitor for the assessment of health-related quality of life. Qual Life Res 1998;7(6):513-9.CrossRefPubMedGoogle Scholar
  33. Ravens-Sieberer U, Gosch A, Abel T, et al. Quality of life in children and adolescents: a European public health perspective. Soz Praventivmed 2001;46(5):294-302.CrossRefPubMedGoogle Scholar

Copyright information

© Bohn Stafleu van Loghum 2003

Authors and Affiliations

  • H. M. Koopman
    • 1
  • J. Bruil
  • S. B. Detmar
  • R. M. Baars
  • J. M. Wit
  1. 1.

Personalised recommendations