The electronic person specific outcome measure (ePSOM) programme: Overview and survey results

Abstract

AbstractBackgroundThe ePSOM programme is a collaboration between the University of Edinburgh and Alzheimer’s Research UK. prompted by the recognition that outcome measures currently used in clinical trials in prodromal and preclinical neurodegenerative diseases do not capture the research participants’ views of effectiveness. This led to a 4‐stage programme. [1] Evidence review and programme methodology [2] Focus groups to identify key domains of importance to people at various degrees of neurodegenerative disease [3] National online survey and [4] App development which can be used as an outcome measure in trials. Here we present stage [3] of the programme.MethodThe online survey captured free text responses in 5 predefined domains. Self‐reported clinical details and sociodemographic data were captured to analyse responses by key variables whilst keeping the survey short (around 15 minutes). The survey received ethical approval and ran August – November 2019. Using clustering and natural language processing techniques we identified clusters of response by domain and across domains. A specific question about the steps individuals take to ‘maintain brain health’ was also included.Result5807 people completed the survey. Most were female (76.9%), married (63.4%) and living in an urban area (61.8%). The mean age in women was 57.35 (SD=13.8) and 62.88 (SD=13.08) in men. 73% had supported a relative with dementia but only 15.4% had sought help for their own brain health. On a 10‐point scale (10 = best level of health), the mean score for self‐rated brain health was 9.32 (SD=1.97). We consider that the population undertaking the survey was exactly as intended as a primary or secondary prevention population. Thirty distinct clusters of response were identified across all domain and will be presented. The most common activities undertaken to maintain brain health were ‘trying to keep brain active’ (86.6%) followed by ‘trying to keep physically active’ (70.8%).ConclusionThe survey was successful in capturing a large number of people from a population at higher risk of neurodegenerative disease. The respondents understood the objectives of the survey and relevant clusters and items emerged which will guide the 4th phase of App development.