Are People Ready for Personalized Brain Health? Perspectives of Research Participants in the Lifebrain Consortium

Abstract

Background and Objectives A healthy brain is central to physical and mental well-being. In this multi-site, qualitative study, we investigated views and attitudes of adult participants in brain research studies on the brain and personalized brain health as well as interest in maintaining a healthy brain. Design and Methods We conducted individual interviews with 44 adult participants in brain research cohorts of the Lifebrain consortium in Spain, Norway, Germany, and the United Kingdom. The interviews were audio recorded, transcribed, and coded using a cross-country codebook. The interview data were analyzed using qualitative content analysis. Results Most participants did not focus on their own brain health and expressed uncertainty regarding how to maintain it. Those actively focusing on brain health often picked one specific strategy like diet or memory training. The participants were interested in taking brain health tests to learn about their individual risk of developing brain diseases, and were willing to take measures to maintain their brain health if personalized follow-up was provided and the measures had proven impact. The participants were interested in more information on brain health. No differences in responses were identified between age groups, sex, or countries. Discussion and Implications Concise, practical, personalized, and evidence-based information about the brain may promote brain health. Based on our findings, we have launched an ongoing global brain health survey to acquire more extensive, quantitative, and representative data on public perception of personalized brain health.

The Global Brain Health Survey: Development of a Multi-Language Survey of Public Views on Brain Health

“…The phase one study included an equal distribution of men and women, the largest group of participants (57%) being older adults age 61+ followed by young adults (29%) aged 18–40, and middle-aged adults (14%) aged 41–60 years A majority of participants (59%) had a university degree and were married or in a stable relationship (64%). About a third (36%) of the participants had been educated or employed in health care-related fields ( 59 ). The study used an interview guide including 26 open questions [Supplementary Material in ( 59 )].…”

“…About a third (36%) of the participants had been educated or employed in health care-related fields ( 59 ). The study used an interview guide including 26 open questions [Supplementary Material in ( 59 )]. Some questions were based on items in previous surveys on brain health, whereas others were developed in collaboration with stakeholders in the Lifebrain consortium's network, such as patient organizations, brain health researchers, clinicians, and cohort participants, to suit the aims of the study.…”

“…The survey questionnaire was developed in two phases. In phase one, the Lifebrain consortium conducted a qualitative interview study among brain research participants (N = 44) in Norway, Spain, Germany and the United Kingdom, to investigate their perceptions of brain health, interest in maintaining a healthy brain, and willingness to learn about personal brain health using brain health tests (59). In phase two, using the findings obtained in phase one, the Global Brain Health Survey was developed.…”

Defining brain health: A concept analysis

“…11 This definition was the one quoted most often by other studies later. [18][19][20][21] Another, more lay definition, came from a qualitative analysis of interviews of the attitudes toward brain health. Interviewees were clinic patients and their proxies.…”

“…These are driven by the emerging evidence that up to 40% of dementia may theoretically be prevented through addressing 12 modifiable risk factors. 14,32 Interestingly, surveys in Europe, 18 USA, 33 and Australia 34 have highlighted existing public awareness of the role of healthy lifestyle behaviours on brain health, although this has not always translated into an increased adoption of healthy behaviours. 35 Finally, we acknowledge that sex and gender are important factor in their own right, beyond covariates, as lifestyle antecedents may differentially influence brain health according to these factors.…”