Patient and carer well-being in memory clinics
Research type
Research Study
Full title
Use of the Long-Term Conditions Questionnaire (LTCQ) to monitor patients’ and carers’ well-being in relation to support from Memory Clinics
IRAS ID
209506
Contact name
Ray Fitzpatrick
Contact email
Sponsor organisation
University of Oxford
Duration of Study in the UK
1 years, 8 months, 0 days
Research summary
Enhancing quality of life for people with dementia is a key focus of English health and social care policy (NHS Outcomes Framework 2.6ii, Adult Social Care Outcomes Framework 2F). However there is currently no measure for assessing the effectiveness of post-diagnosis care for people with dementia. Monitoring quality of life in people with cognitive impairment (including dementia) presents unique challenges: the extent to which this group is able to take part in self-administered measures is not known, and the role that friends/family members who provide support (informal carers) could play in routine quality-of-life monitoring is not well defined. The Long-Term Conditions Questionnaire (LTCQ) is a short self-report measure designed to assess impacts and support needed for a wide range of physical and mental health conditions, but to date the LTCQ has not been tested amongst patients with cognitive impairment or amongst informal carers. This study will explore the use of the LTCQ for monitoring well-being in people who have received a diagnosis of a long-term condition after referral to a memory clinic, and their carers. During Phase 1 of the study interviews will be conducted with approximately 15 patients and 30 carers, to learn if the LTCQ covers all areas of importance for these groups and if patients and/or carers are able to use the LTCQ to self-report their quality of life. If using the LTCQ in this way is found to be acceptable, then a Phase 2 survey will be conducted to test the practicality of using the LTCQ on a larger scale. Phase 2 will involve people with cognitive impairment and/or their carers taking the LTCQ at two time points, four months apart, to test if the LTCQ is a good measure of the effectiveness of memory clinic services during the early post-diagnosis time period.
REC name
HSC REC A
REC reference
16/NI/0264
Date of REC Opinion
6 Dec 2016
REC opinion
Favourable Opinion