Using PROMs to improve dementia care: memory clinic pilot v1
Research type
Research Study
Full title
Using Patient-Reported Outome Measures (PROMs) to improve dementia care: memory clinic pilot
IRAS ID
117896
Contact name
Sarah Smith
Contact email
Research summary
Dementia is becoming an increasingly important challenge as more people experience it either themselves or through a family member. It also represents an enormous challenge for health and social care services. As new treatments and ways of caring are introduced, we need to be able to assess the impact they have on the quality of life (QoL) of people with dementia and their lay carers. We also need to be able to provide information to the public, providers such as GPs and hospitals, and those who commission services about the effectiveness of local services. In this study we will measure the QoL of people with dementia in two ways: by trained staff administering questionnaires to the person with dementia and by asking their lay carer (eg a family member) to complete a questionnaire. We will also ask the lay carers about their own state of health and QoL. We will use these data to find out about the costs and benefits of two important practices: Memory Assessment Services (or memory clinics) for early diagnosis of dementia and discontinuing the use of anti-psychotic drugs. In this study we will pilot this process in 4 clinics around the UK and recruit approximately 50 patients in each clinic. Written consent will be obtained from those taking part. The pilot study will enable us to complete the development and preparatory work necessary for the full study. This includes: adaptation of the proxy-reported HRQL questionnaire so as to be self-reported rather than interviewer administered; determine the most appropriate method of administering questionnaires in busy clinics, psychometric work to refine the scoring algorithm and investigate the extent to which proxy- reports can be substituted for self-reports, confirm sample sizes for the main evaluation study.
REC name
London - Queen Square Research Ethics Committee
REC reference
13/LO/0544
Date of REC Opinion
10 Jun 2013
REC opinion
Further Information Favourable Opinion