Title: Improving outcomes for children and young people with diabetes from socio-economically deprived and/or ethnic minority groups.
Funder: Department of Health and Social Care

Abstract: Research question: Can we deliver an intervention package, targeting deprived and ethnic minority groups living with childhood diabetes, that improves glycaemic control and reduces risk of long-term complications? Background: Children and young people with type 1 or type 2 diabetes (CYPD) from economically deprived and/or ethnic minority (underserved) groups have consistently poorer outcomes in terms of glucose control, than those from more affluent, white backgrounds. This is likely due to a myriad of socio-economic, cultural and access barriers to better engagement. Poorer glucose control places these already disadvantaged groups at greater risk of diabetes related short and long-term complications, further increasing their illness burden. Aims and objectives: To develop, with our underserved groups as partners, culturally acceptable intervention packages based on community liaison key-workers(s) targeting education and behaviour change, addressing the specific personal, family, cultural and community barriers to optimal glucose control faced by these groups with type 1 or type 2 diabetes. Methods: This is a four phase study: Work package one (WP1): quantitative and ethnographic reviews of targeted interventions and cultural values and beliefs about diabetes with in depth discussions with selected client groups: Work package two (WP2): development of a community liaison-worker(s) based intervention package that addresses key barriers to improved engagement and self-management. This will be delivered with evidence from WP1 and with direct involvement of target patient groups; Work package three (WP3): Feasibility study of intervention in two hospital diabetes clinics with analysis of patient recruitment and engagement, and refinement of package from qualitative interviews; Work package four (WP4): Cluster randomised trial in 30 paediatric diabetes units, with an internal pilot trial (10 units) with high prevalence of deprived and/or ethnic minority groups using the intervention package developed through phases 1-3. Primary outcome: change in glycated haemoglobin at 12 months compared to baseline. Timelines for delivery: Starting in October 2021, WPs 1 and 2 will be completed by July 2023, WP3 by August 2024 and WP4 by June 2026 with anticipated full trial outcomes available to be implemented in NHS services by December 2026. Anticipated impact and dissemination: We expect the intervention to improve engagement in areas that we know lead to better glucose control: these include increased use of carbohydrate counting, increased access to, and take up of technologies, such as insulin pumps and continuous blood glucose monitoring; and increased support in community organisations such as schools. The overall impact will be to improve diabetes management in those groups consistently disadvantaged by poorer glucose control, to levels seen in more affluent and/or white UK groups. We expect to publish at least six articles in leading diabetes journals, disseminate our work through social media and the Regional Paediatric Diabetes Networks and provide sufficient evidence and economic data to support funding through the NHS best practice tariff to employ key workers in relevant clinics nationally.

Lay abstract: What do we want to do: We will ask children and young people with diabetes (CYPD) and their families from poorer and/or ethnic minority backgrounds how language issues, feelings, income, living conditions and food availability affect how they manage diabetes? Together, we will find ways to make diabetes management easier and more successful. Why we are doing this: Diabetes causes high blood sugar levels. This leads to eye and kidney damage if not well looked after. We know that better sugar control reduces risk of damage. Children with diabetes, from poorer and/or ethnic minority groups, often have worse sugar control. This increases their risk of complications when compared to children from better off and/or white UK families. We don't know why there are these differences. The complications often develop when they are young adults who are working and starting families. The NHS wants people to take greater control over their own health (no decisions about me without me). Researchers have previously tried to reduce health inequalities between different groups of children. They have tried employing key support workers and encouraged youth groups. Extra mental health, financial and housing support has been tried. They have encouraged more exercise, healthy eating, and maths skills. However, there is little evidence that these actions improve outcomes. Importantly, they have not asked the young people with diabetes what they think about the plans. How we will do it: We will work with young people, their families, and diabetes staff to develop an action plan that families feel comfortable with and that will support them to improve their self-management. We will talk with those who live the condition and together, we will discuss barriers to better care and form an action plan to make diabetes management less difficult. We will first test the action plan in two hospitals. Promising and easy to deliver actions, will then be tested in a trial in lots more hospitals. We want to show we can improve sugar control in young people using simple interventions that can be delivered cheaply in the NHS. How are patients and the public involved? We are working with Diabetes UK including their children s group, Young Person s Advisory Groups (YPAG), Breaking Down Barriers (who promote diversity and Inclusion), The South Asian Health Foundation, and Somali fieldworkers and families. An Advisory Group led by Diabetes UK/Breaking Down Barriers will directly help us develop the trial at all stages. Explaining our results: We will use social media for people living with diabetes so they can see what we are doing. We will have public meetings to discuss our results. We will write reports for doctors, nurses, dietitians and leading influencers in diabetes and NHS care.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: METABOLIC AND ENDOCRINE