Carers’ interpretation of the recall period and perspective-taking when completing the EQ health and wellbeing instrument (EQ-HWB)-9 as proxies for people with dementia: a think-aloud study

Purpose

Patient-reported outcome measures are often administered with specific recall periods to standardise reporting. However, research on recall periods in proxy reporting is limited. This study sought to explore (1) how informal carers interpret the “last 7 days” recall period of the EQ health and well-being instrument (EQ-HWB)-9 and (2) the perspective they adopt when completing the measure to report on the health and well-being of persons with dementia.

Methods

A qualitative, descriptive study was conducted. Convenience sampling was used for recruitment. We interviewed informal carers of persons with dementia in Australia using semi-structured cognitive interviews. Participants were asked to think aloud when completing the EQ-HWB-9, and three additional positively-framed questions from the EQ-HWB. Thematic analysis was used, where transcripts were inductively coded to capture new insights and deductively coded as guided by the EQ-HWB-9 questions.

Results

Nineteen carers completed interviews. Carers used two main retrieval strategies: supplementing recent observations with key events or self-report occurring slightly outside the recall period, and drawing on the past to contextualise recent behaviours. All participants used their own observations and opinions of the person with dementia (“proxy–proxy perspective”). When questions about the person’s feelings were difficult to answer, carers relied on various observable behaviours as indirect indicators. Nearly half also imagined how the person might answer (“proxy–patient perspective”), even if they sometimes disagreed with the person’s self-assessment.

Conclusion

The 7-day recall period for the EQ-HWB-9 was more consistently adhered to for observable aspects of health. Wording changes may be needed to support consistent use, particularly for less observable items. Challenges in perspective-taking and adherence were also identified, suggesting areas to address in instructions.