Validation study of the prototype of a disease-specific index measure for health-related quality of life in dementia
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RESEARCH
Open Access
Validation study of the prototype of a disease-specific index measure for health-related quality of life in dementia Carla J M Schölzel-Dorenbos1*, Alexander M M Arons2, Joost J G Wammes3, Marcel G M Olde Rikkert4 and Paul F M Krabbe5
Abstract Background: Index measures for health-related quality of life (HRQoL) quantify the desirability (utility) of a certain health state. The commonly used generic index measure, e.g. EuroQol: EQ-5D, may underestimate relevant areas of specific diseases, resulting in lower validity. Disease-specific index measures on the other hand combine disease-specificity and quantification of perceived quality on several health domains of a certain disease into one single figure. These instruments have been developed for several diseases, but a dementia-specific HRQoL index instrument was not yet available. Facing the increasing individual and societal burden of dementia, specific HRQoL values with metric characteristics are especially useful because they will provide vital information for health outcome research and economic evaluations. Aims of the study: To develop and validate the prototype of a dementia-specific HRQoL index measure: Dementia Quality of life Instrument (DQI), as the first step towards valuation of the dementia health state. Methods: For development of the DQI we created a conceptual framework based on a review of the literature, qualitative interviews with people with dementia and their carers, expert opinion and team discussion. To assess validity we undertook a survey under 241 dementia professionals. Measurements consisted of ranking (1–5) and rating (1–10) of 5 dementia-specific DQI domains (memory, orientation, independence, social activities and mood) and simultaneously rating of 9 DQI-derived health states on a visual analogue scale (VAS). We also performed a cross-sectional study in a large sample of people with very mild to moderate dementia and their caregivers (N = 145) to assess feasibility and concurrent validity. In addition, caregivers valued 10 DQI and 10 EQ-5D + C derived health states of the patient simultaneously on the same VAS. Setting: outpatient clinics, nursing homes and patient residences. (Continued on next page)
* Correspondence: [email protected] 1 Multidisciplinary Memory Clinic Slingeland Hospital/Alzheimer Centre Nijmegen, Radboud University Nijmegen Medical Centre, Kruisbergseweg 25, Doetinchem 7009 BL, The Netherlands Full list of author information is available at the end of the article © 2012 Schölzel-Dorenbos et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Schölzel-Dorenbos et al. Health and Quality of Life Outcomes 2012, 10:118 http://www.hqlo.com/content/10/1/118
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Results: All professionals judged th
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