Abstract
Purpose
This paper describes the development of an add-on module for the World Health Organization WHOQOL measures of quality of life for use with adults with physical or intellectual disabilities. The add-on module, known as the WHOQOL-DIS, was derived following standard WHOQOL methodology and is designed to assess people with disabilities.
Results
In the pilot phase of the study, 12 centres from around the world carried out focus groups with people with physical disabilities, people with intellectual disabilities, with their carers, and with relevant professionals in order to identify gaps in the coverage of the WHOQOL-BREF that were relevant for their quality of life. Items generated from the focus groups were then tested in a pilot study with 1,400 respondents from 15 different centres worldwide, with items being tested and reduced using both classical and modern psychometric methods. A field trial study was then carried out with almost 3,800 respondents, again with the use of both classical and modern psychometric methods.
Conclusions
The outcome of the two rounds of data collection and analysis is a 12-item module that can be used in conjunction with the WHOQOL-BREF or the WHOQOL-100 for assessment of quality of life in physically or intellectually disabled people. Further modifications are also proposed for the use of the WHOQOL-BREF with adults with intellectual disabilities, including simplification of wording of some of the items, the use of a three-point response scale, and the inclusion of smiley faces.
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The details of The WHOQOL-Dis Group are given in the Appendix.
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This paper was written on behalf of the WHOQOL-DIS Group by Mick Power. The study was funded by the European Commission Framework 6 Programme and was carried out under the auspices of the World Health Organization Quality of Life Group (WHOQOL Group). The WHOQOL-DIS Group comprises a coordinating group and collaborating investigators in each of the following field centres: Professor M. Power, Dr. A. Green, Dr. C. Catchpole, and Ms. J. MacLeod, University of Edinburgh, UK; Dr. Somnath Chatterji, World Health Organization, Geneva; Dr. R. Lucas, Insititut Català de l’Envelliment, Barcelona, Spain; Professor A. Leplege, University of Paris 7; Dr. Eva Dragomirecka, Prague Psychiatric Centre; Professor Martin Eisemann, University of Tromso; Professor Erhan Eser, Celal Bayar University, Turkey; Dr. Jelena Ceremnych, Insitute of Experimental and Clinical Medicine, Vilnius; Dr. Rosa Frazzica, Dr. Pasquale Di Mattia and Dr. Marilena Pinco, Centre for Training and Research in Public Health, Sicily; Dr. Silke Schmidt, Insitute of Medical Psychology, Hamburg; Professor Guus van Heck, Dr. Jolanda de Vries, Dr. Brenda Den Oudsten, Tilburg University; Professor L. Kullman, Eötvös Loránd University, Faculty of Special Education, Budapest, Hungary; Professor Ji-Qian Fang, Dr. Yuantao Hao, Sun Yat-sen University, Guangzhou, China; Dr. Marcelo Fleck, FUSRGS, Porto Alegre, Brazil; Professor S. Chaturvedi, National Institute for Mental Health and Neurosciences, Bangalore, India; Professor Laura Schwartzmann, Universidad de la Republica, Montevideo, Uruguay; Professor Kathryn McPherson, Professor Rex Billington, Auckland University of Technology; Dr. Keith McVilly, RMIT, Dr. Graeme Hawthorne, Melbourne University, Australia.
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Power, M.J., Green, A.M. & The WHOQOL-Dis Group. Development of the WHOQOL disabilities module. Qual Life Res 19, 571–584 (2010). https://doi.org/10.1007/s11136-010-9616-6
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DOI: https://doi.org/10.1007/s11136-010-9616-6