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

Published online by Cambridge University Press:  19 December 2006

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

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.

Type
Original Article
Copyright
2006 Cambridge University Press

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