Psychological Medicine



Original Article

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


S. C. SMITH a1a2, D. L. LAMPING a2, S. BANERJEE a1c1, R. H. HARWOOD a3, B. FOLEY a1, P. SMITH a1, J. C. COOK a1, J. MURRAY a1, M. PRINCE a4, E. LEVIN a5, A. MANN a4 and M. KNAPP a6
a1 Section of Mental Health and Ageing, Health Services Research Department, Institute of Psychiatry, King's College London, UK
a2 Health Services Research Unit, London School of Hygiene and Tropical Medicine, London, UK
a3 Department of Health Care of the Elderly, Queen's Medical Centre, Nottingham, UK
a4 Section of Epidemiology, Institute of Psychiatry, King's College London, UK
a5 Social Care Institute for Excellence, London, UK
a6 SSRU, The London School of Economics, London, UK

Article author query
smith sc   [PubMed][Google Scholar] 
lamping dl   [PubMed][Google Scholar] 
banerjee s   [PubMed][Google Scholar] 
harwood rh   [PubMed][Google Scholar] 
foley b   [PubMed][Google Scholar] 
smith p   [PubMed][Google Scholar] 
cook jc   [PubMed][Google Scholar] 
murray j   [PubMed][Google Scholar] 
prince m   [PubMed][Google Scholar] 
levin e   [PubMed][Google Scholar] 
mann a   [PubMed][Google Scholar] 
knapp m   [PubMed][Google Scholar] 

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.

(Published Online December 19 2006)


Correspondence:
c1 PO 26, Section of Mental Health and Ageing, Health Services Research Department, Institute of Psychiatry, King's College London, UK. (Email: spjussb@iop.kcl.ac.uk)


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