Active Diabetes, Hormones & Metabolism Pregnancy, Children & Inherited Conditions

Improving outcomes for children and young people with diabetes from socio-economically deprived and/or ethnic minority groups.

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Children and young people with diabetes from poorer or ethnic minority backgrounds will get a dedicated community key worker to help them manage their condition, under a new intervention being tested in 30 NHS clinics. This matters because these groups consistently have worse blood sugar control than their more affluent white peers, putting them at higher risk of blindness, kidney failure, and amputations. The problem is not biological—it stems from barriers such as cost, language, cultural beliefs, and lack of support in schools. Existing diabetes care rarely addresses these obstacles. If the trial succeeds, the intervention could close the gap in outcomes. The key worker would help families access insulin pumps and continuous glucose monitors, teach carbohydrate counting, and liaise with schools. The researchers expect to provide enough evidence for NHS England to fund these workers through the best practice tariff, making the support routine rather than experimental. The project runs from October 2021 to December 2026, with a cluster randomised trial in 30 paediatric diabetes units. Results will be published in leading diabetes journals and shared through regional NHS networks.

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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.

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Related Research

Grants with similar aims, by meaning.

Improving outcomes for children and young people with diabetes from socioeconomically deprived and/or ethnic minority groups
Improving Participation in Type 1 Diabetes Research in Children and Young People from Disadvantaged Communities (ImPacT)
A pilot study to examine the feasibility of improving engagement with supported self-management in diabetic patients in disadvantaged populations.
Improving outcomes for children and young people with diabetes from socio-economically deprived and/or ethnic minority groups
Improving outcomes for hard to access/vulnerable children and young people with diabetes.

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