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Measuring health-related quality of life in children: the development of the TACQOL parent form

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Abstract

Health-related quality of life (HRQoL), conceptualized as patients' own evaluations of their health status, is an important criterion in evaluating health and health care and in the treatment of individual patients. Until now, few systematic attempts have been made to develop instruments to assess the HRQoL of children using such a conceptualization. This article describes the conceptualization and results of a study aiming to develop such an instrument for children aged 6–15 years using their parents as a proxy. The feasibility and psychometric performance of the instrument were evaluated in a study of 77 patients of the paediatric out-patient clinic of Leiden University Hospital. For each of the a priori-defined domains, a parent form scale could be constructed with satisfactory reliability and moderate correlations with the other scales. Only some of the parents indicating health status problems also signalled negative reactions to these problems. This is, in our view, a strong argument for the distinction between health status and quality of life (QoL). The correlation coefficients between the parent form and a children's questionnaire were low. Overall, the psychometric performance of the TACQOL parent form looks promising, which suggests that this instrument– with some modifications–can indeed be used to assess group differences in HRQoL in children. The results, however, should be replicated in larger samples, currently under study. The relation between parents' proxy reports on the HRQoL of their children and children's self-reports needs further investigation.

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References

  1. Spee-van der Wekke J, Meulmeester JF, Hirasing RA, Verloove-Vanhorick SP. Grijs en groen: ontwikkelingen en toekomstverwachting kindertal in Nederland. Tijdschr Jeugdgezondheidsz 1992; 24: 58-61.

    Google Scholar 

  2. Hirasing RA, Schaapveld K. Vaccinatie tegen bof succesvol. Ned Tijdschr Geneeskd 1993; 137: 1498-1500.

    Google Scholar 

  3. Saigal S, Rosenbaum P, Stoskopf B et al. Comprehensive assessment of the health status of extremely low birthweight children at eight years of age: comparison with a reference group. J Pediatr 1994; 125: 411-417.

    Google Scholar 

  4. Saigal S, Feeny D, Furling W et al. Comparison of the health-related quality of life of extremely low birthweight children and a reference group of children at age eight years. J Pediatr 1994; 125: 418-425.

    Google Scholar 

  5. Gemke RJBJ, Bonsel GJ, van Vught AJ. Long term survival and state of health after paediatric intensive care. Arch Dis Childhood 1995; 73: 196-201.

    Google Scholar 

  6. Veen S, Ens-Dokkum MH, Schreuder AM, Verloove-Vanhorick SP, Brand R, Ruys JH. Impairments, disabilities, and handicaps of very preterm and very-low-birthweight infants at five years of age in The Netherlands. Lancet 1991; 338: 33-36.

    Google Scholar 

  7. Feeny D, Furlong W, Barr RD, Torrance GW, Rosenbaum P, Weitzman S. A comprehensive multiattribute system for classifying the health state of survivors of childhood-cancer. J Clin Oncol 1992; 10: 923-928.

    Google Scholar 

  8. World Health Organization. International Classification of Impairments, Disabilities, and Handicaps. Geneva: World Health Organisation, 1980.

    Google Scholar 

  9. Gill TM, Feinstein AR. A critical appraisal of the quality of quality-of-life measurements. J Am Med Assoc 1994; 272: 619-626.

    Google Scholar 

  10. O'Boyle C. Making subjectivity scientific. Lancet 1995; 345: 602.

    Google Scholar 

  11. Collings JA. Epilepsy and well-being. Soc Sci Med 1990; 31: 165-170.

    Google Scholar 

  12. Collings JA. Psychosocial well-being and epilepsy: an empirical study. Epilepsia 1990; 31: 418-426.

    Google Scholar 

  13. Aaronson NK. Quality of life: what is it? How should it be measured? Oncology 1988; 2: 69-74.

    Google Scholar 

  14. Eisen M, Ware JE, Donald CA, Brook RH. Measuring components of children's health status. Med Care 1979; 9: 902-921.

    Google Scholar 

  15. Fitzpatrick R, Fletcher A, Gore S, Jones D, Spiegelhalter D, Cox D. Quality of life measures in health care. I: applications and issues in assessment. BMJ 1992; 305: 1074-1077.

    Google Scholar 

  16. Bradburn NM. The Structure of Psychological Well-being. Chicago: Aldine Publishing Company, 1969.

    Google Scholar 

  17. Bergner M, Bobbit RA, Carter WB, Gilson BS. The Sickness Impact Profile: development and final revision of a health status measure. Med Care 1981; 19: 787-805.

    Google Scholar 

  18. Bullinger M, Hasford J. Evaluating quality-of-life measures for clinical trials in Germany. Control Clin Trials 1991; 12: 91S-105S.

    Google Scholar 

  19. Christie MJ, French D, Weatherstone L, West A. The patients' perception of chronic disease and its management: psychosomatics, holism and quality of life in contemporary management of childhood asthma. Psychother Psychosom 1991; 56: 197-203.

    Google Scholar 

  20. Kamphuis RP. The concept of quality of life in pediatric oncology. In: Aaronson NK and Beckman J eds. The Quality of Life of Cancer Patients. New York: Raven Press, 1987.

    Google Scholar 

  21. Stein REK, Jones Jessop D. Functional status II(R). A measure of child health status. Med Care 1990; 28: 1041-1055.

    Google Scholar 

  22. van de Geer JP. Analyse van Kategorische Gegevens. Van Loghum Slaterus, 1988.

  23. Sprangers MAG, Aaronson NK. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol 1992; 45: 743-760.

    Google Scholar 

  24. Verhulst FC, Prince J, Vervuurt-Poort C, de Jong J de. Mental health in Dutch adolescents: self-reported competencies and problems for ages 11–18. Acta Psychiatr Scand 1989; 80(Suppl 356):1-18.

    Google Scholar 

  25. Verhulst FC, Akkerhuis GW. Agreement between parents' and teachers' ratings of behavioral/emotional problems of children aged 4–12. J Child Psychiatr 1989; 30: 123-136.

    Google Scholar 

  26. Deyo RA, Diehr P, Patrick DL. Reproduciblity and responsiveness of health status measures. Statistics and strategies for evaluation. Control Clin Trials 1991; 12: 142s-148s.

    Google Scholar 

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Vogels, T., Verrips, G.H.W., Verloove-Vanhorick, S.P. et al. Measuring health-related quality of life in children: the development of the TACQOL parent form. Qual Life Res 7, 457–465 (1998). https://doi.org/10.1023/A:1008848218806

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  • DOI: https://doi.org/10.1023/A:1008848218806

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