ePSOM Project: Focus groups study

• Research type

  Research Study

• Full title

  The Electronic Person Specific Outcome Measures (ePSOM) Project for Alzheimer’s disease: Understanding the outcomes that matter to patients at different stages of progression of Alzheimer's disease and other forms of dementia

• IRAS ID

  234579

• Contact name

  Craig Ritchie

• Contact email

  Craig.Ritchie@ed.ac.uk

• Sponsor organisation

  University of Edinburgh

• Duration of Study in the UK

  0 years, 5 months, 3 days

• Research summary

  The Centre for Dementia Prevention (CDP) brings together expertise to understand and reduce risk associated with dementia and the prevention of progression of dementia which has already been diagnosed. Alzheimer Research UK is funding the CDP to undertake a qualitative research study to gain an understanding of the outcomes that matter to patients and the trade-off between benefits and risks when taking part in clinical trials for treatments to prevent disease progression. This is important because it helps in developing treatments and care which have the greatest benefit for patients.
  Up to 60 people with subjective cognitive disorder, mild cognitive impairment and mild Alzheimer’s dementia will be recruited to take part in focus groups. Focus groups are ideal for eliciting ideas, thoughts and perceptions about a specific topic with a number of people with common experiences or characteristics. Six focus groups will be conducted in Edinburgh with up to 10 people in each group. Each person will attend one focus group. Two researchers will explore with the participants what they consider to be the most important outcomes to measure in assessing the effectiveness of clinical trials for Alzheimer’s dementia and other forms of dementia. The focus group discussion will be guided by the key findings from a literature review on Patient Related Outcomes Measures (PROMS) in Mild Cognitive Impairment. From the focus group the key domains for benefit from an intervention from the patient perspective will be identified. These domains will be used in the next study (not part of this application) to develop a population wide survey, which in turn will inform the design of an electronic Person Specific Outcome Measure (ePSOM) in the form of an App for use in future clinical trials for prodromal Alzheimer dementia. This is out of scope for the current proposal.

• REC name

  South East Scotland REC 01

• REC reference

  17/SS/0135

• Date of REC Opinion

  20 Oct 2017

• REC opinion

  Further Information Favourable Opinion