Encouraging access for South Asians to timely dementia diagnosis
| ISRCTN | ISRCTN67269658 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN67269658 |
| Secondary identifying numbers | 12 LO 1584 |
- Submission date
- 21/07/2017
- Registration date
- 31/07/2017
- Last edited
- 12/07/2018
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Mental and Behavioural Disorders
Plain English summary of protocol
Background and study aims
People from minority ethnic backgrounds tend to seek help later for dementia so their outcomes are likely to be worse. An educational programme has been designed to encourage South Asian people to seek help for dementia earlier. This involves providing people aged over 50 who are South Asian with information regarding dementia through their GPs. This programme needs to be tested to see how feasible it is to recruit and follow up participants in order to determine if the intervention is acceptable. The aim of this study is to evaluate the acceptability and feasibility of a programme that provides South Asian people with information about dementia to encourage them to seek help earlier.
Who can participate?
South Asian adults aged 50 and older who have not been diagnosed with dementia.
What does the study involve?
Potential participants are sent a letter from their GP informing them about the research study and advising them to get in touch with the researchers should they wish to take part. Once participants have indicated their interest in the study, they are sent the participant information sheet which has more detail about the study. Once they have had time to read the information sheet (at least 24 hours), the researcher contacts them to ask if they agree to take part. Participants are allocated to one of two groups. Those in the first group receive a letter and video about dementia. Those in the second group do not receive anything. Participants then are asked to make an appointment where they are asked questions about themselves, what they know about dementia and how they feel about getting help for memory problems. This same questionnaire is then repeated at a three month follow up appointment.
What are the possible benefits and risks of participating?
There are no direct benefits with participating however participants receive high street vouchers to compensate for their time completing the questionnaires. There are no direct risks with participating however participants may find the questions about dementia distressing.
Where is the study run from?
This study is being run by University College London (UK) and takes place in eight health centres in the UK.
When is the study starting and how long is it expected to run for?
January 2013 to December 2017
Who is funding the study?
National Institute for Health Research (UK)
Who is the main contact?
Dr Naaheed Mukadam
n.mukadam@ucl.ac.uk
Contact information
Public
UCL Division of Psychiatry
Maple House
149 Tottenham Court Road
London
W1T 7NF
United Kingdom
 ORCID ID |
0000-0001-8635-9521 |
|---|---|
| Phone | +44 207 6799251 |
| n.mukadam@ucl.ac.uk |
Study information
| Study design | Pilot cluster randomised controlled trial |
|---|---|
| Primary study design | Interventional |
| Secondary study design | Cluster randomised trial |
| Study setting(s) | GP practice |
| Study type | Other |
| Scientific title | Encouraging Access for South Asians to Timely Dementia Diagnosis: A pilot cluster randomised controlled trial |
| Study acronym | EAST-Dem |
| Study objectives | It is feasible to recruit and follow up people for a pilot trial of an intervention to encourage help-seeking for dementia and the intervention will be acceptable. |
| Ethics approval(s) | NRES Committee Fulham, 08/10/2012, ref: 12/LO/1584 |
| Health condition(s) or problem(s) studied | Dementia |
| Intervention | Potential participants are sent a letter from their GP informing them about the research study and advising them to get in touch with the researchers should they wish to take part. Once participants have indicated their interest in the study, they are sent the participant information sheet which has more detail about the study. Once they have had time to read the information sheet (at least 24 hours), the researcher contacts them to ask if they agree to take part. Participants are then randomly allocated to one of two groups. Intervention group: Participants are given a letter from their GP with an enclosed leaflet and DVD about dementia and getting help for memory symptoms. This is sent to participants once and they are then given complete an initial questionnaires and repeat the questionnaire again after three months. Control group: Participants in this group receive no intervention and complete the same initial questionnaire and repeated questionnaire at three months. |
| Intervention type | Behavioural |
| Primary outcome measure | 1. Acceptability of intervention is measured using a Likert scale rating the intervention from completely unacceptable (1) to completely acceptable (5) 2. Feasibility of recruitment is measured using the proportion of people who consented to take part after initially expressing an interest in the study and follow-up is measured using the proportion of people who completed follow-up out of the initial sample |
| Secondary outcome measures | 1. Behavioural intention is measured using the APEND questionnaire, at the start of the study and approximately 3 months after the initial visit 2. Knowledge about dementia is measured using Dementia Knowledge Questionnaire at the start of the study and approximately 3 months after the initial visit |
| Overall study start date | 01/01/2013 |
| Completion date | 31/12/2017 |
Eligibility
| Participant type(s) | Healthy volunteer |
|---|---|
| Age group | Adult |
| Sex | Both |
| Target number of participants | 80 |
| Key inclusion criteria | 1. South Asian person registered to participating GP practice 2. Aged over 50 3. No known diagnosis of dementia |
| Key exclusion criteria | 1. Diagnosis of dementia 2. Aged under 50 3. Not South Asian 4. No capacity to consent |
| Date of first enrolment | 20/01/2016 |
| Date of final enrolment | 02/12/2016 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centres
Maple House
149 Tottenham Court Road
London
W1T 7NF
United Kingdom
75 Fleet Road
London
NW3 2QU
United Kingdom
London
London NW5 3LN
United Kingdom
Ilford
IG1 2SF
United Kingdom
London
NW6 1TP
United Kingdom
Barking
-
United Kingdom
1 King Edward’s Road
Barking
IG11 7TB
United Kingdom
London
NW8 0AG
United Kingdom
London
NW6 4DX
United Kingdom
Sponsor information
University/education
Joint Research Office (part of the Research Support Centre)
UCL
1st Floor, Maple House – Suite B
149 Tottenham Court Road
London
W1T 7DN
England
United Kingdom
| Website | www.ucl.ac.uk |
|---|---|
"ROR" |
https://ror.org/02jx3x895 |
Funders
Funder type
Government
Government organisation / National government
- Alternative name(s)
- National Institute for Health Research, NIHR Research, NIHRresearch, NIHR - National Institute for Health Research, NIHR (The National Institute for Health and Care Research), NIHR
- Location
- United Kingdom
Results and Publications
| Intention to publish date | 12/12/2017 |
|---|---|
| Individual participant data (IPD) Intention to share | Yes |
| IPD sharing plan summary | Available on request |
| Publication and dissemination plan | Intent to publish our findings in a peer reviewed journal. |
| IPD sharing plan | The datasets generated during and/or analysed during the current study are/will be available upon request from Naaheed Mukadam at n.mukadam@ucl.ac.uk. |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Results article | results | 01/05/2018 | Yes | No |
Editorial Notes
12/07/2018: Publication reference added.
