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
Prospectively registered
Protocol
Statistical analysis plan
Results
Individual participant data

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

Dr Naaheed Mukadam
Public

UCL Division of Psychiatry
Maple House
149 Tottenham Court Road
London
W1T 7NF
United Kingdom

ORCiD logoORCID ID 0000-0001-8635-9521
Phone +44 207 6799251
Email n.mukadam@ucl.ac.uk

Study information

Study designPilot cluster randomised controlled trial
Primary study designInterventional
Secondary study designCluster randomised trial
Study setting(s)GP practice
Study typeOther
Scientific titleEncouraging Access for South Asians to Timely Dementia Diagnosis: A pilot cluster randomised controlled trial
Study acronymEAST-Dem
Study objectivesIt 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) studiedDementia
InterventionPotential 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 typeBehavioural
Primary outcome measure1. 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 measures1. 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 date01/01/2013
Completion date31/12/2017

Eligibility

Participant type(s)Healthy volunteer
Age groupAdult
SexBoth
Target number of participants80
Key inclusion criteria1. South Asian person registered to participating GP practice
2. Aged over 50
3. No known diagnosis of dementia
Key exclusion criteria1. Diagnosis of dementia
2. Aged under 50
3. Not South Asian
4. No capacity to consent
Date of first enrolment20/01/2016
Date of final enrolment02/12/2016

Locations

Countries of recruitment

  • England
  • United Kingdom

Study participating centres

University College London
Division of Psychiatry
Maple House
149 Tottenham Court Road
London
W1T 7NF
United Kingdom
Hampstead Group practice
The Hampstead Group Practice
75 Fleet Road
London
NW3 2QU
United Kingdom
Prince of Wales Medical Centre
52 Prince of Wales Road
London
London NW5 3LN
United Kingdom
Mathukia's Surgery
281 Ilford Lane
Ilford
IG1 2SF
United Kingdom
West Hampstead Medical Centre
9 Solent Road
London
NW6 1TP
United Kingdom
Dr Chawla Surgery
60 Victoria Road
Barking
-
United Kingdom
King Edwards Medical Group
King Edward’s Medical Centre
1 King Edward’s Road
Barking
IG11 7TB
United Kingdom
Abbey Medical Centre
85 Abbey Road
London
NW8 0AG
United Kingdom
Belsize Priory Medical Practice
208 Belsize Road
London
NW6 4DX
United Kingdom

Sponsor information

University College London
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 logo "ROR" https://ror.org/02jx3x895

Funders

Funder type

Government

National Institute for Health Research
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 date12/12/2017
Individual participant data (IPD) Intention to shareYes
IPD sharing plan summaryAvailable on request
Publication and dissemination planIntent to publish our findings in a peer reviewed journal.
IPD sharing planThe 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.