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

BMJ Open. 2018 Jan 21;8(1):e018996. doi: 10.1136/bmjopen-2017-018996.

Abstract

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 Quality of Life in Alzheimer's Disease (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, the basis of cost utility analysis. This study will generate a preference-based scoring algorithm for a health state classification system -the Alzheimer's Disease Five Dimensions (AD-5D) derived from the QOL-AD.

Methods and analysis: Discrete choice experiments with duration (DCETTO) and best-worst scaling health state valuation tasks will be administered to a representative sample of 2000 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. This study has ethical approval.

Keywords: best worst scaling; dementia; discrete choice experiment; quality adjusted life year; utility weight.

Publication types

  • Research Support, Non-U.S. Gov't
  • Validation Study

MeSH terms

  • Alzheimer Disease / psychology*
  • Alzheimer Disease / therapy*
  • Australia
  • Caregivers / psychology
  • Cost-Benefit Analysis
  • Humans
  • Logistic Models
  • Prospective Studies
  • Psychiatric Status Rating Scales*
  • Psychometrics
  • Quality of Life*
  • Quality-Adjusted Life Years
  • Research Design*
  • Retrospective Studies
  • Surveys and Questionnaires