The Development of the DISABKIDS Instruments

Rationale for the Development

In view of the necessity to tap at the HRQoL of children with health conditions, especially chronic conditions, the DISABKIDS project was forwarded to the programme Quality of Life and Management of Living Resources of the Fifth Framework of the European Union. A crucial point for this project was to apply an assessment methodology which gives voice to the children and the adolescents concerns as well as their parents and families. The project proposed a European cooperation to construct an assessment instrument for HRQoL in which the persons concerned play a major role in the needs for care explicitly voice in addressed by the persons in that psycho-social as well as clinical and socio-economical. The funding of the project by the EU made it possible to construct, develop, test and refine an instrument system which is now called The DISABKIDS Questionnaires.

The specific approach which makes the project unique is the cross-cultural perspective, the modular system, and the combination of specific and generic aspects, the inclusion of a wide age range and the representation of parent’s and children’s views. This approach was deemed particularly helpful in devising an instrument set that can be applied to a broad range of research in clinical health settings. Different chronic health conditions were selected to contribute to the development of the questionnaire. Concerning the focus of the questionnaire, it was important that it included overall aspects of having a chronic health condition as well as including specific sub-modules. Furthermore, different age ranges are reflected. In summary, the overall objectives of the project were:


  • to develop and promote the use of standardised instruments to assess HRQoL in children with chronic health conditions,
  • to enhance the possibility of multi-national European studies of HRQoL,
  • to assess HRQoL from the patients’ perspective by addressing the needs of care, and
  • to enhance HRQoL and the independence of children with chronic health conditions.




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