Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2005 Nov 13:3:70.
doi: 10.1186/1477-7525-3-70.

The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents

Rolanda M Baars  1 , Clare I Atherton, Hendrik M Koopman, Monika Bullinger, Mick Power; DISABKIDS group
Affiliations

The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents

Rolanda M Baars et al. Health Qual Life Outcomes. .

Abstract

Background: The European DISABKIDS project aims to enhance the Health Related Quality of Life (HRQoL) of children and adolescents with chronic medical conditions and their families. We describe the development of the seven cross-nationally tested condition-specific modules of the European DISABKIDS HRQoL instrument in a population of children and adolescents. The condition-specific modules are intended for use in conjunction with the DISABKIDS chronic generic module.

Methods: Focus groups were used to construct the pilot version of the DISABKIDS condition-specific HRQoL modules for asthma, juvenile idiopathic arthritis, atopic dermatitis, cerebral palsy, cystic fibrosis, diabetes and epilepsy. Analyses were conducted on pilot test data in order to construct field test versions of the modules. A series of factor analyses were run, first, to determine potential structures for each condition-specific module, and, secondly, to select a reduced number of items from the pilot test to be included in the field test. Post-field test analyses were conducted to retest the domain structure for the final DISABKIDS condition-specific modules.

Results: The DISABKIDS condition-specific modules were tested in a pilot study of 360 respondents, and subsequently in a field test of 1152 respondents in 7 European countries. The final condition-specific modules consist of an 'Impact' domain and an additional domain (e.g. worry, stigma, treatment) with between 10 to 12 items in total. The Cronbach's alpha of the final domains was found to vary from 0.71 to 0.90.

Conclusion: The condition-specific modules of the DISABKIDS instrument were developed through a step-by-step process including cognitive interview, clinical expertise, factor analysis, correlations and internal consistency. A cross-national pilot and field test were necessary to collect these data. In general, the internal consistency of the domains was satisfactory to high. In future, the DISABKIDS instrument may serve as a useful tool with which to assess HRQoL in children and adolescents with a chronic condition. The condition-specific modules can be used in conjunction with the DISABKIDS chronic generic module.

PubMed Disclaimer

Figures

Figure 1
Figure 1
Modular design of the DISABKIDS* and KIDSCREEN† instrument.
Figure 2
Figure 2
Work packages within the DISABKIDS project.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Andelman RB, Zima BT, Rosenblatt AB. Quality of Life of Children: Toward Conceptual Clarity. In: Maruish ME, editor. The use of psychological testing for treatment planning and outcomes assessment. Mahwah, NJ, Lawrence Erlbaum; 1999. pp. 1383–1413.
    1. Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technol Assess. 2001;5:1–157. - PubMed
    1. Clarke SA, Eiser C. The measurement of health-related quality of life (QOL) in paediatric clinical trials: a systematic review. Health Qual Life Outcomes. 2004;2:66. doi: 10.1186/1477-7525-2-66. - DOI - PMC - PubMed
    1. Baars RM, van der Pal SM, Koopman HM, Wit JM. Clinicians' perspective on quality of life assessment in paediatric clinical practice. Acta Paediatr. 2004;93:1356–1362. doi: 10.1080/08035250410027733. - DOI - PubMed
    1. Bender BG. Measurement of quality of life in pediatric asthma clinical trials. Ann Allergy Asthma Immunol. 1996;77:438–445. - PubMed

Publication types