Background: International guidelines recommend structured diabetes education to empower individuals with type 2 diabetes (T2D). While DESMOND is an effective programme for T2D management, it is often inaccessible to people with intellectual disabilities (ID) due to their unique needs. There is limited evidence on the effectiveness of adapted T2D education for this group, despite the importance of tailored support in preventing complications and early mortality.We previously adapted the DESMOND programme for adults with ID, creating DESMOND-ID. A feasibility study showed it is possible to recruit and deliver the programme to adults with ID and their carers, who found it valuable. Initial findings suggest DESMOND-ID may improve blood glucose control, warranting further investigation through a large-scale randomised controlled trial (RCT).
Methods: The "My Diabetes & Me" study will be conducted in two stages: an internal pilot and a main RCT. The pilot will recruit 108 participants over 10 months to assess recruitment and retention, using glycated haemoglobin (HbA1c, mmol/mol) at six months as the primary outcome. This will inform the design of the main study.Across both stages, 450 participants will be randomly assigned to receive either the DESMOND-ID intervention or treatment as usual (TAU). The intervention group, with their carers, will attend weekly sessions for seven weeks, plus two booster sessions at one and three months post-programme.Primary outcome is HbA1c at six months. Secondary outcomes include HbA1c at 12 and 18 months (pilot only), anthropometric data, self-reported outcomes, and other risk factors. A process evaluation will explore barriers and facilitators to implementation using qualitative and quantitative methods.
Conclusion: DESMOND-ID is the first structured T2D education programme tailored for adults with ID, and this RCT is the first to evaluate its clinical and cost-effectiveness.
Trial registration: 09/11/2022ISRCTN83150600 ( https://doi.org/10.1186/ISRCTN83150600).
Keywords: HbA1c; Keywords: intellectual disability; education programme; randomised controlled trial.; self-management; type 2 diabetes.
People with type 2 diabetes (T2D) are encouraged to take part in education programmes to help them understand their condition and manage it well. One such programme, called DESMOND, has been shown to work. However, many people with intellectual disabilities (ID) cannot take part because these programmes are not designed for their needs. This matters because without the right support, people with ID are at higher risk of serious health problems. To address this, we adapted DESMOND to create a version specially designed for adults with ID and their carers, called DESMOND-ID. In an earlier, smaller study, we found that DESMOND-ID could be delivered successfully and was well received. People told us it was useful, and there were early signs that it may help improve blood sugar levels. We are now planning a large UK-wide study, called My Diabetes & Me, to properly test whether DESMOND-ID works and whether it provides good value for money. This study has two parts: • A pilot involving 108 people, to check if the study can run smoothly and to track their blood sugar levels over six months. • A larger main study including 450 people in total (counting those in the pilot). Half of the participants will take part in DESMOND-ID, while the other half will receive their usual diabetes care. The DESMOND-ID programme includes seven weekly sessions followed by two review sessions, delivered to people with ID and their carers. We will measure blood sugar levels and other health indicators to see if the programme improves health. We will also study how it is delivered in different settings, and what helps or makes it harder to run. This will be the first large study of a diabetes self management education programme designed specifically for people with intellectual disabilities.
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