Developing a dementia-specific preference-­based quality of life measure (AD-5D) in Australia: a valuation study protocol

Introduction: Generic instruments for assessing health-related quality of life may lack the sensitivity to detect changes in health specific to certain conditions, such as dementia. The QOL-AD is a widely used and well validated condition-specific instrument for assessing health-related quality of life for people living with dementia, but it does not enable the calculation of Quality Adjusted Life Years (QALYs), the basis of cost utility analysis. This study will generate a preference-based scoring algorithm for a health state classification system (the AD-5D) derived from the QOL-AD. Methods and analysis: Discrete choice experiments with duration (DCETTO) and best-worst scaling (BWS) health state valuation tasks will be administered to a representative sample of 2,000 members of the Australian general population via an online survey and to 250 dementia dyads (250 people with dementia and their carers) via face-to-face interview. A multinomial (conditional) logistic framework will be used to analyse responses and produce the utility algorithm for the AD-5D. Ethics and dissemination: The algorithms developed will enable prospective and retrospective economic evaluation of any treatment or intervention targeting people with dementia where the QOL-AD has been administered and will be available online. Results will be disseminated through journals that publish health economics articles and through professional conferences. The study has ethical approval.