The clinical and cost-effectiveness of the DESMOND-ID education programme for adults with intellectual disability and Type 2 Diabetes

Research question: Does a diabetes education programme tailored specifically for people with intellectual disability (ID) improve self-management of Type 2 diabetes (T2D) compared to usual care?

Background: T2D is 2-3 times more common in people with ID than the general population. People with ID/T2D are not offered diabetes education as recommended by NICE that is routinely offered to the general population. This may be partly because UK diabetes education programmes are not tailored for people with ID.

In an earlier Diabetes UK funded feasibility study, we successfully adapted a self-management education programme (DESMOND) for adults with ID (creating DESMOND-ID) and showed that we can deliver this to adults with ID/T2D. We now propose a larger study to test if DESMOND-ID has the same benefits for adults with ID that the DESMOND studies have shown for non-disabled adults, thereby improving the health of this population and reducing health inequalities.

Aims and objectives: Our primary aim is to determine the effects of DESMOND-ID versus usual care on HbA1c at 6 months in adults with ID/T2D

Our secondary objectives will determine the effects of DESMOND-ID on biomedical and cardiovascular disease risk factors, depression, understanding of T2D, and healthy lifestyle factors and behaviour change, at 6 and 12 months as well as assessing its cost-effectiveness. Our process evaluation will identify facilitators, barriers and mechanisms involved in the DESMOND-ID process

Methods: This will be a 2-stage randomised trial with an internal pilot, economic and process evaluations across 8 UK sites. Stage 1 (internal pilot) will run for 10 months in 3 sites (N Ireland, Leicester and Glasgow), and aim to recruit 108 participants (36 per site: 18 intervention, 18 control). The DESMOND-ID programme will be delivered over 7 weeks, 2½ hours/week, with 6-8 adults with ID/T2D and their family member, carer, partner or friend in each group, followed by booster sessions at 1 and 3 months.

Each site will deliver the programme to 3 groups during the pilot. If we achieve the progression criteria, Stage 1 will run seamlessly into Stage 2 (full trial), opening all 8 sites, recruiting an additional 342 adults with ID/T2D, and conducting the process and economic evaluations

Timelines for delivery: The study will last 45 month. Ethics, staff appointments and protocol development will begin 3mths pre-trial and run into the first 6mths to allow time for set up and opening the 3 pilot sites. The internal pilot will last 10mths (m5-14).

If we achieve the progression criteria, we will continue into the main trial (m15), opening the remaining sites and recruiting 342 more adults with ID/T2D, with 6 and 12mth follow-up concluding in month 37 (m15-37). The study will finish with data cleaning and analysis (m40-42), site close-down and reporting (m40-45)

Anticipated impact and dissemination: If DESMOND-ID is shown to be effective, the study’s main impact should be its adoption as standard practice for this ID population across the UK. Dissemination will include a report to the funder, a user-friendly report, social media/blogs, research publications and conference presentations, and presentations to service user and carer groups.

We will work with our PPI partners and national professional stakeholders (Diabetes UK, Public Health England, Scottish Learning Disability Consortium) to inform policy and practice (NICE/SCIE).