An in‐depth analysis of a large national survey on person‐specific outcome measures (EPSOMS): Human/Novel outcomes measures

Background: The ePSOM programme, a collaboration between the University of Edinburgh and Alzheimer’s Research UK, was 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 4-stage programme involved an evidence review and programme methodology, focus groups to identify key domains of importance to people at various degrees of neurodegenerative disease, a National online survey and the development of an App development which will permit the design of an outcome measure for use in regulatory trials. Here we present results from an in-depth analyses of the national survey responded by over 5,500 individuals.
Method: A short online survey collected information about individuals sociodemographic background and bran health and on 5 domains identified as relevant to individuals based on results from focus groups of people living with memory problems, healthy volunteers and telephone interviews with health and social care professionals. These domains covered everyday functioning, enjoyable activities, relationships and social interactions, cognitive function and identity. Data was analysed using clustering and natural language programming techniques.
Result: The survey was completed by 5,807 individuals, of which 75% were women. Average age of respondents was 58.6 (SD=13.8), living in urban areas (61%) and married (63.4%). There are 82514 responses across the five domains. The largest cluster of responses are associated with “Reading” this cluster accounts for 3107 of the answers given. Closely followed by “Car/Drive” with 2969 answers. Other clusters identified with above 1000 answers are “Walk”, “Garden”, “Cook”, “Understand”, “Chat”, “Remember” and “Shop”.
Conclusion: Our work generated strong and new evidence based on a large sample of individuals. Results are relevant for the future development of patient reported outcomes.