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Developing a dementia-specific preference-­based quality of life measure (AD-5D) in Australia: a valuation study protocol
  1. Tracy A Comans1,2,
  2. Kim-Huong Nguyen2,3,
  3. Brendan Mulhern4,
  4. Megan Corlis2,5,
  5. Li Li3,
  6. Alyssa Welch1,2,
  7. Susan E Kurrle2,6,
  8. Donna Rowen7,
  9. Wendy Moyle3,
  10. Sanjeewa Kularatna8,
  11. Julie Ratcliffe2,9
  1. 1 The Centre for Health Services Research, University of Queensland, Brisbane, Queensland, Australia
  2. 2 NHMRC’s Partnership Centre on Dealing with Cognitive and Related Functional Decline in Older People, Sydney, New South Wales, Australia
  3. 3 Menzies Health Institute Queensland, Griffith University, Brisbane, Queensland, Australia
  4. 4 Centre for Health Economics Research and Evaluation, University of Technology Sydney, Sydney, New South Wales, Australia
  5. 5 Helping Hand Aged Care, North Adelaide, South Australia, Australia
  6. 6 Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia
  7. 7 Health Economics and Decision Science, School of Health and Related Research, University of Sheffield, Sheffield, UK
  8. 8 Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, Queensland, Australia
  9. 9 Institute for Choice, UniSA Business School, University of South Australia, Adelaide, South Australia, Australia
  1. Correspondence to A/Prof Tracy A Comans; t.comans{at}uq.edu.au

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.

  • dementia
  • quality adjusted life year
  • discrete choice experiment
  • best worst scaling
  • utility weight

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors TAC, K-HN, JR, BM, DR conceived the study; TAC, K-HN, JR, BM, DR, SK, MC, SEK and WM contributed to the design of the study; TAC, K-HN, AW and LL wrote the manuscript. All authors read, contributed and approved the manuscript.

  • Funding This study is supported by funding provided by the National Health and Medical Research Council (NHMRC) Partnership Centre on Dealing with Cognitive and Related Functional Decline in Older People (grant number GNT9100000).

  • Disclaimer The contents of the published materials are solely the responsibility of the Administering Institution, Griffith University and the individual authors identified, and do not reflect the views of the NHMRC or any other funding bodies or the funding partners.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval This study has ethical approval from Griffith University HREC (number 2016/626).

  • Provenance and peer review Not commissioned; externally peer reviewed.