My Diabetes and Me Study - DESMOND-ID

We have received funding from the National Institute for Health Research (Health Technology Assessment (HTA) programme) of £2.2m from Sept 22 – Aug 25 to explore whether a diabetes education programme (DESMOND-ID) tailored specifically for people with intellectual disability can improve self-management of Type 2 diabetes compared to usual care?

Background to the research

People with intellectual disabilities are more likely to develop Type 2 Diabetes. They tend to develop it at a younger age and are less likely to have access to appropriate support that would help them to manage the condition. This may make it more likely that they will have other health problems, such as heart or kidney disease and strokes, and die younger.

Aims

We want to find the best way to help people with a learning or intellectual disability who have Type 2 Diabetes. We will test whether providing some structured education around managing their diabetes and maintaining healthier lifestyles (diet, exercise) helps people with intellectual disabilities to manage their blood sugar and to stay healthier in the future.

What are we going to do?

We have developed an education programme called DESMOND-ID, which is about diabetes and is suitable for adults with intellectual disabilities and their carers/partners/advocates. The programme lasts 7 weeks, two and a half hours per week, followed by two booster sessions at 3 and 5 months. The adult with intellectual disability and their carer/partner/advocate is encouraged to attend together. The programme supports people to better manage their diabetes. We have already done a small study which showed that the programme can be delivered and is acceptable to service users and carers. We now need to do a larger research study to find out if our programme brings about health benefits for adults with intellectual disabilities who have Type 2 Diabetes. For example, we want to see the effects on people’s diets, physical activity, and diabetes control (blood sugar).

To test the programme, we will conduct a randomised trial. We will recruit 450 adults with intellectual disabilities who have Type 2 Diabetes, from Northern Ireland, Scotland, and England (Leicestershire). With their permission, half will be randomly chosen to receive the diabetes education (DESMOND-ID) while the others continue with their usual care. We will measure everyone’s blood sugar (HbA1c) when they are recruited and twice more later in the study. We will then compare the results for the people allocated to the programme and those in the control group. We also compare other things between the groups, such as blood pressure, cholesterol, weight, and health and well-being measures; and carry out an economic evaluation to see if DESMOND-ID is good value for money.

Our study has two stages and will last four years. The first stage will be a pilot trial to check that enough people will join the study. If successful, we will move to the second stage, the main trial.

Patient and public involvement

CAN, a local intellectual disability charity in Northern Ireland, has already helped us to develop this proposal. We also did a survey with 38 adults with intellectual disabilities and Type 2 Diabetes and used their answers to design the study. We are grateful for their committed and ongoing support, and we will continue to work closely with our PPI stakeholders (CAN, Diabetes UK, Mencap).

Dissemination

Our PPI group will help us to disseminate the results of this study nationally to service users, families, and staff. We will work with Diabetes UK to influence policy and practice. If DESMOND-ID is effective, we will do our best to help it become standard practice for people across the UK.