Abstract
BackgroundIt is important to use outcome measures for novel interventions in Alzheimer’s disease (AD) that capture the research participants’ views of effectiveness. The electronic Person-Specific Outcome Measure (ePSOM) development programme is underpinned by the need to identify and detect change in early disease manifestations and the possibilities of incorporating artificial intelligence in outcome measures.ObjectivesThe aim of the ePSOM programme is to better understand what outcomes matter to patients in the AD population with a focus on those at the pre-dementia stages of disease. Ultimately, we aim to develop an app with robust psychometric properties to be used as a patient reported outcome measure in AD clinical trials.DesignWe designed and ran a nationwide study (Aug 2019 - Nov 2019, UK), collecting primarily free text responses in five pre-defined domains. We collected self-reported clinical details and sociodemographic data to analyse responses by key variables whilst keeping the survey short (around 15 minutes). We used clustering and Natural Language Processing techniques to identify themes which matter most to individuals when developing new treatments for AD.ResultsThe study was completed by 5,808 respondents, yielding over 80,000 free text answers. The analysis resulted in 184 themes of importance. An analysis focusing on key demographics to explore how priorities differed by age, gender and education revealed that there are significant differences in what groups consider important about their brain health.DiscussionThe ePSOM data has generated evidence on what matters to people when developing new treatments for AD that target secondary prevention and therein maintenance of brain health. These results will form the basis for an electronic outcome measure to be used in AD clinical research and clinical practice.
Highlights
Attempts to develop disease modifying therapies for Alzheimer’s disease (AD) started over 20 years ago with little success to date
These test results correlate with brain imaging findings in hippocampal subfields known to be sensitive to amyloid derived neurotoxicity [6]; as well as in changes to brain β-amyloid in at risk populations aged between 63-81 years old who did not have dementia [7]
Building on the scientific foundation provided by previous stages of the electronic Person-Specific Outcome Measure (ePSOM) research programme, we designed and ran a nationwide study with open ended questions to derive free text answers exploring what matters to people about maintaining their brain health within five focus group-derived domains
Summary
Attempts to develop disease modifying therapies for Alzheimer’s disease (AD) started over 20 years ago with little success to date. We are exploring AD processes at earlier disease stages through examining at-risk populations in mid-life which helps identify the earliest manifestation of declining brain health. Changes occurring years earlier than dementia develops have been observed in at-risk populations using exploratory and sensitive computerised tests assessing e.g. allocentric and egocentric spatial processing [5]. DISCUSSION: The ePSOM data has generated evidence on what matters to people when developing new treatments for AD that target secondary prevention and therein maintenance of brain health. These results will form the basis for an electronic outcome measure to be used in AD clinical research and clinical practice
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