TY - JOUR
T1 - A UK-Wide Study Employing Natural Language Processing to Determine What Matters to People about Brain Health to Improve Drug Development
T2 - The Electronic Person-Specific Outcome Measure (ePSOM) Programme
AU - Saunders, Stina
AU - Muniz-Terrera, G.
AU - Sheehan, S.
AU - Ritchie, C. W.
AU - Luz, S.
N1 - Funding Information:
Funding Sources: The ePSOM survey was funded by Alzheimer’s Research UK.
Publisher Copyright:
© 2021, The Author(s).
PY - 2021/6/9
Y1 - 2021/6/9
N2 - Background: It 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. Objectives: The 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. Design: We 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. Results: The 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. 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.
AB - Background: It 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. Objectives: The 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. Design: We 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. Results: The 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. 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.
KW - Alzheimer’s disease
KW - brain health
KW - Clinically meaningful change
KW - electronic patient reported outcome measures
KW - outcome measures
UR - http://www.scopus.com/inward/record.url?scp=85108008412&partnerID=8YFLogxK
U2 - 10.14283/jpad.2021.30
DO - 10.14283/jpad.2021.30
M3 - Article
AN - SCOPUS:85108008412
SN - 2274-5807
JO - Journal of Prevention of Alzheimer's Disease
JF - Journal of Prevention of Alzheimer's Disease
ER -