Development of a new measure of health-related quality of life for people with dementia: DEMQOL

S C Smith, D L Lamping, S Banerjee, R H Harwood, B Foley, P Smith, J C Cook, J Murray, M Prince, E Levin, A Mann, M Knapps

Research output: Contribution to journalArticlepeer-review

207 Citations (Scopus)

Abstract

Background. We identified the need to develop a scientifically rigorous measure of health-related quality of life (HRQL) in dementia that would be appropriate for use at all stages of dementia severity and would be available in both self- and proxy-report versions. Method. We used standard psychometric methods to eliminate items with poor psychometric properties (item-reduction field test) and to assess the acceptability, reliability and validity of the item-reduced instruments (psychometric evaluation field test). We developed and validated two versions of DEMQOL: a 28-item interviewer-administered questionnaire that is self-reported by the person with dementia (DEMQOL) and a 31-item interviewer-administered questionnaire that is proxy-reported by a caregiver (DEMQOL-Proxy). Results. DEMQOL shows high reliability (internal consistency and test-retest) and moderate validity in people with mild/moderate dementia. DEMQOL-Proxy shows good acceptability and internal consistency and moderate evidence of validity in people with mild/moderate and severe dementia. Test-retest reliability and performance in people with severe dementia need further testing. Conclusions. DEMQOL and DEMQOL-Proxy show psychometric properties that are comparable with the best available dementia-specific measures of HRQL. We recommend that DEMQOL and DEMQOL-Proxy are used together. Reliability and validity need to be confirmed in independent samples and responsiveness needs to be evaluated.
Original languageEnglish
Pages (from-to)737 - 746
Number of pages10
JournalPsychological Medicine
Volume37
Issue number5
DOIs
Publication statusPublished - May 2007

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