How do people with dementia and family carers value dementia specific quality of life states? An explorative “Think Aloud” study

Julie Ratcliffe, Claire Louise Hutchinson, Rachel Milte, Kim‐Huong Nguyen, Alyssa Welch Welsh, Tessa Caporale, Megan Corlis, Tracy Comans

Research output: Contribution to journalArticle

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Abstract

Only in recent years have people with dementia and their family member carers been included in qualitative studies that valuate quality of life measures. Their involvement offers a potential wealth of information for health economists on the lived experience of dementia, which can inform our understanding of the value and benefits of health and social care services. However, questions remain regarding how best to involve them in such studies.

The current study was part of a larger investigation to value the Quality of Life in Alzheimer’s Disease instrument. People living with dementia (n=13) and their carers (n=14) undertook a Discrete Choice Experiment (with an incorporated attribute for years of survival in that health state) and Best Worst Scaling exercise via a face-to-face interview with a trained interviewer. The interviews were undertaken using a ‘Think Aloud’ approach, where participants were encouraged to explain their reasoning for their choices. These interviews were audio-recorded and transcribed, and subsequently analysed by two independent researchers using a pre-defined template to identify evidence of heuristics used by participants in their choices, challenges for participants in undertaking the tasks, and their preferred tasks and why.

We found strong evidence of task engagement; however, participants found it challenging weighing up the alternative options presented, and utilised a range of strategies to assist them in decision making. These included ‘anchoring’ the presented states against familiar or current health states, or simplifying the decision by ignoring matched attributes between the DCE choice sets and focusing on attributes that differed. Evidence of well defined preferences was also found, with some participants focusing consistently on particular attributes (for example physical health status) when making their decisions. This study provides further evidence of the validity of the DCE and BWS approaches in their population, when applied using appropriate methods to support implementation.
Original languageEnglish
Pages (from-to)75-82
Number of pages8
JournalAustralasian Journal on Ageing
Volume38
Issue numberS2
DOIs
Publication statusPublished - 2019

Bibliographical note

(CC-BY 4.0) Open Access article licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license (http://creativecommons.org/licenses/by/4.0)

Keywords

  • dementia
  • economic evaluation
  • health status
  • patient preference
  • quality-adjusted life years

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