Quality of Life Research

, Volume 9, Issue 6, pp 625–636 | Cite as

Which source should we use to measure quality of life in children with asthma: The children themselves or their parents?

  • E. M. le Coq
  • A. J. P. Boeke
  • P. D. Bezemer
  • V. T. Colland
  • J. Th. M. van Eijk


This study compares the reproducibility, construct validity and responsiveness of self-report and parent-report quality of life questionnaires How Are You (HAY) for 8–12-year-old children with asthma. A total of 228 Dutch children with asthma and their parents completed the HAY and daily recorded the child's asthma symptoms in a diary. Additionally 296 age- and -gender matched healthy children and their parents completed the generic part of the HAY. Reproducibility and responsiveness were examined in a sub-group of 80 children with asthma. In this group, three measurements were carried out, at baseline, after one week and once during the following 6 month when the clinical asthma status had changed. The within-subject standard deviations (SD) of three dimensions (physical activities, social activities, self-management) differed significantly (p < 0.05) in favour of the parent-version, indicating that the reproducibility of the parent version was better than that of the child version. The mean score-differences between children with asthma and healthy children as reported by parents did not significantly differ from those reported by children, except for cognitive activities (e.g. be able to concentrate on school work). The mean differences with regard to children with a different actual asthma status (symptom analysis), as reported by both informants, did not differ. Compared to the child-version, the parent-version showed greater ability to detect changes in children's quality of life over time for all but one dimension, indicating better responsiveness. The results indicate that in discriminative studies child and parents reports can be substituted on a group-level. In longitudinal studies data have to be obtained from parents. Consequently, caregivers collecting quality of life data for longitudinal purposes in daily practice should collect these data simply from parents.

Asthma Child report Parent report Quality of life 


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  1. 1.
    Usherwood TP, Scrimgeour A, Barber JH. Questionnaire to measure perceived symptoms and disability in asthma. Arch Dis Child 1990; 65: 779–781.PubMedCrossRefGoogle Scholar
  2. 2.
    Christie MJ, French D, Sowden A, et al. Development of child-centered disease-specific questionnaires for living with asthma. Psychosom Med 1993; 55: 541–548.PubMedGoogle Scholar
  3. 3.
    Creer TL, Wigal JK, Kotses H, et al. A life activities questionnaire for childhood asthma. J Asthma 1993; 30: 467–473.PubMedGoogle Scholar
  4. 4.
    Juniper EF, Guyatt GH, Feeny DH, et al. Measuring quality of life in children with asthma. Qual Life Res 1996; 5: 35–46.PubMedCrossRefGoogle Scholar
  5. 5.
    Rosenbaum P, Cadman D, Kirpalani H. Pediatrics: Assessing quality of life. In: Spilker B, (ed), Quality of Life Assessments in Clinical Trials, New York: Raven Press, 1990; 205–215.Google Scholar
  6. 6.
    Finlay AY. Quality of life measurement in dermatology: A practical guide. Br J Derm 1997; 136: 305–314.CrossRefGoogle Scholar
  7. 7.
    Hays RD, Vickrey BG, Hermann BP, et al. Agreement between self-reports and proxy reports on quality of life in epilepsy patients. Qual Life Res 1995; 4: 159–168.PubMedCrossRefGoogle Scholar
  8. 8.
    Guyatt GH, Juniper EF, Lauren E, et al. Children and adult perceptions of childhood asthma. Pediatrics 1997; 99: 165–168.PubMedCrossRefGoogle Scholar
  9. 9.
    Rutishauser C, Sawyer SM, Bowes G. Quality of life as-sessment in children and adolescents with asthma. Eur Respir J 1998; 12: 486–494.PubMedCrossRefGoogle Scholar
  10. 10.
    Bender BG. Measurement of quality of life in pediatric asthma clinical trials. Ann Allergy Asthma Immunol 1996; 77: 438–447.PubMedCrossRefGoogle Scholar
  11. 11.
    Achenbach TM, McConaughy SH, Howell CT. Child/ad-olescent behavioral and emotional problems: Implications of cross-informant correlations for situational specificity. Psychological Bulletin 1987; 101: 213–232.PubMedCrossRefGoogle Scholar
  12. 12.
    Verhulst FC, Althaus M, Berden GF. The child assessment schedule: Parent-child agreement and validity measures. J Child Psychol Psychiatr 1987; 28: 455–466.Google Scholar
  13. 13.
    Pantel RH, Lewis CC. Measuring the impact of medical care on children. J Chron Dis 1987; 40: 99s–108s.CrossRefGoogle Scholar
  14. 14.
    Fritz GK, Overholser JC. Patterns of response to childhood asthma. Psychosom Med 1989; 51: 347–355.PubMedGoogle Scholar
  15. 15.
    Weissman MM, Orvaschel H, Padian N. Children's symptom and social functioning self-report scales. Comparison of mothers' and children's reports. J Nerv Ment Dis 1980; 168: 736–740.PubMedGoogle Scholar
  16. 16.
    Colland VT. Learning to cope with asthma. Intervention programmes for children and parents [thesis]. Amsterdam: University of Amsterdam, 1990.Google Scholar
  17. 17.
    Herjanic B, Reich W. Development of a structured psychiatric interview for children: Agreement between child and parent on individual symptoms. J Abnormal Child Psychol 1982; 10(2): 307–324.CrossRefGoogle Scholar
  18. 18.
    Gretton K. Comparing self measurement of quality of life with parental proxy in children with chronic disease [thesis]. Nottingham: University of Nottingham, Medical School, 1996.Google Scholar
  19. 19.
    Czyzewski DI, Mariotto MJ, Bartholomew LK, LeCompte SH, Sockrider MM. Measurement of quality of well being in a adolescent cystic fibrosis population. Med Care 1992; 32: 965–972.CrossRefGoogle Scholar
  20. 20.
    Verhulst FC, van der Ende J. Assessment of child psycho-pathology: Relationships between different methods, different informants and clinical judgement of severity. Acta Psychiatr Scand 1991; 84: 155–159.PubMedGoogle Scholar
  21. 21.
    Verhulst FC, van der Ende J. Agreement between parents' reports and adolescents' self-reports of problem behavior. J Child Psychol Psychiat 1992; 33: 1011–1023.PubMedGoogle Scholar
  22. 22.
    Theunissen NC, Vogels TG, Koopmen HM, et al. The proxy problem: Child report versus parent report in health related quality of life research. Qual Life Res 1998; 7: 387–397.PubMedCrossRefGoogle Scholar
  23. 23.
    Vogels T, Verrips GHW, 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: 457–465.PubMedCrossRefGoogle Scholar
  24. 24.
    Coq EM le, Colland VT, Boeke AJP, Bezemer DP, Eijk JThM van. 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: 34–58.Google Scholar
  25. 25.
    Coq EM le, Boeke AJP, Bezemer PD, Bruil J, Eijk JThM van. Clinimetric properties of a parent-report on their offspring's quality of life. J Clin Epidemiol 2000; 53: 139–146.PubMedCrossRefGoogle Scholar
  26. 26.
    Guyatt G, Walter S, Norman G. Measuring change over time: Assessing the usefulness of evaluative instruments. J Chron Dis 1987; 40: 171–178.PubMedCrossRefGoogle Scholar
  27. 27.
    Warner JO, Naspitz CK. Third international pediatric consensus statement on the management of childhood asthma. Pediatr Pulmonol 1998; 25: 1–17.PubMedCrossRefGoogle Scholar
  28. 28.
    Calman KC. Quality of life in cancer patients: An hypothesis. J Medical Ethics 1984; 10: 124–127.Google Scholar
  29. 29.
    Bruil J. Development of a quality of life instrument for children with a chronic illness [thesis]. Leiden: University of Leiden, 1999.Google Scholar
  30. 30.
    Quanjer PhH, Tammeling GJ, Cotes JE, et al. Lung volumes and forced ventilatory flows. Report working party standardization of lung function tests. European community for steel and coal. Eur Respir J 1993; 6: (Suppl 16): 5–40.Google Scholar
  31. 31.
    Zapletal A, Samanek M, Paul T. Lung function in children and adolescents. In: Herzog H (ed), Methods, reference values. Basel: S Karger AG, 1987: 1–220.Google Scholar
  32. 32.
    Deyo RA, Centor RM. Assessing the responsiveness of functional scales to clinical change: An analogy to diagnostic test performance. J Chron Dis 1986; 39: 897–906.PubMedCrossRefGoogle Scholar
  33. 33.
    Marks GTB, Dunn SM, Woolcock AJ. A scale for the measurement of quality of life of adults with asthma. J Clin Epidemiol 1992; 45: 461–472.PubMedCrossRefGoogle Scholar
  34. 34.
    Kaptein AA, Brand PLP, Dekker FW, et al. Quality of life in a long-term multicentre trial in chronic nonspecific lung disease: Assessment at baseline. Eur Respir J 1993; 6: 1479–1484.PubMedGoogle Scholar
  35. 35.
    Rietveld S, Prins PJM, Colland VT. The influence of re-spiratory sounds on breathlessness in children with asthma: A symptom-perception approach. Health Psychol 1997; 16,6: 1–7.CrossRefGoogle Scholar
  36. 36.
    Snedecor GW, Cochran WG. Statistical methods. Ames: Iowa State University Press, 1979: 1–27.Google Scholar
  37. 37.
    Cohen J. Statistical power analysis for the behavioural sciences. New York: Academic Press, 1979: 1–27.Google Scholar
  38. 38.
    Versluis-den Bieman HJ, Verhulst FC. Self-reported and parent-reported problems in adolescent international adoptees. J Child Psychol Psychiatr 1995; 36: 1411–1428.Google Scholar

Copyright information

© Kluwer Academic Publishers 2000

Authors and Affiliations

  • E. M. le Coq
    • 1
    • 2
  • A. J. P. Boeke
    • 1
    • 2
  • P. D. Bezemer
    • 1
    • 3
  • V. T. Colland
    • 1
    • 4
    • 5
  • J. Th. M. van Eijk
    • 6
  1. 1.Institute for Research in Extramural MedicineVrije UniversiteitAmsterdamThe Netherlands
  2. 2.Department of General Practice, Nursing Home Medicine and Social MedicineVrije UniversiteitAmsterdamThe Netherlands
  3. 3.Department of Epidemiology and Biostatistics, Faculty of MedicineVrije UniversiteitAmsterdamThe Netherlands
  4. 4.Asthma Center HeideheuvelHilversumThe Netherlands
  5. 5.Department of Health PsychologyUniversity of UtrechtUtrechtThe Netherlands
  6. 6.Department of Medical SociologyUniversity of MaastrichtThe Netherlands

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