Quality of Life Research

, Volume 14, Issue 4, pp 1065–1077

Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: A European perspective

  • Corinna Petersen
  • Silke Schmidt
  • Mick Power
  • Monika Bullinger
Article

DOI: 10.1007/s11136-004-2575-z

Cite this article as:
Petersen, C., Schmidt, S., Power, M. et al. Qual Life Res (2005) 14: 1065. doi:10.1007/s11136-004-2575-z
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Abstract

Health-related quality of life (HRQOL) assessment in children and adolescents with chronic health conditions is increasingly considered as a relevant topic. The aim of the EU-funded DISABKIDS project is to develop, test, and implement European instruments for the assessment of HRQOL of children and adolescents with disabilities and their families. The current paper describes the development and pilot testing of a chronic generic HRQOL measure. Using literature searches, expert consulting and focus groups with children/adolescents and their families, items of the instruments were developed and translated into the respective languages. A pilot test with 360 children and adolescents was conducted. Children and adolescents (8–12, 13–16 years) with different chronic health conditions (asthma, epilepsy, diabetes, arthritis, atopic dermatitis, cerebral palsy, and cystic fibrosis) as well as their families were included. Data were analysed according to predefined psychometric and content criteria. Psychometric analyses resulted in a 56-item chronic generic HRQOL questionnaire with six domains (‘Medication’, ‘Physical’, ‘Emotion’, ‘Independence’, ‘Social Inclusion’, ‘Social Exclusion’) with acceptable internal consistency.

Keywords

ChildrenChronic conditionHealth-related quality of lifePaediatric

Copyright information

© Springer 2005

Authors and Affiliations

  • Corinna Petersen
    • 1
  • Silke Schmidt
    • 1
  • Mick Power
    • 2
  • Monika Bullinger
    • 1
  1. 1.Institute of Medical PsychologyUniversity Clinic Hamburg-EppendorfGermany
  2. 2.Section of Clinical and Health PsychologyUniversity of EdinburghUK
  3. 3.Centre of Psychosocial Medicine, Institute of Medical PsychologyUniversity Clinic Hamburg-EppendorfHamburgGermany