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Home > News & events > News > UK diabetes and kidney charities establish key research and healthcare recommendations for diabetic kidney disease
A new paper, published in Diabetic Medicine, co-authored by Breakthrough T1D, Diabetes UK, and Kidney Research UK has identified six themes to tackle diabetic kidney disease (DKD).
The paper follows a workshop held last year that brought together healthcare professionals, academics, charity representatives, and people living with all types of diabetes and/or kidney disease and provides a focus on finding ways to improve kidney health for people living with diabetes and developing treatments to reduce kidney damage.
Diabetes is the leading cause of kidney failure in the UK, with around one in three people living with diabetes developing DKD during their lifetime. High blood glucose levels can damage the small blood vessels and tiny filters in the kidneys. Over time, people living with DKD can progress to kidney failure and may require dialysis or a kidney transplant. Learn more about type 1 diabetes (T1D) and kidney damage.
Despite its prevalence, people with diabetes often receive little information about the causes, management, and prevention of DKD. We also know that essential care is not being delivered to everyone that needs it.
Receiving vital healthcare checks has been shown to reduce the chances of developing complications of diabetes, like DKD. Measuring the proteins albumin and creatinine in urine (uACR testing) can provide early warning signs of kidney problems before other symptoms appear and monitor kidney function. The uACR test should be completed each year for people living with T1D. But in 2022/23, roughly 1.6 million people living with diabetes in England did not receive their essential health checks for kidney damage.
Our joint workshop with Diabetes UK and Kidney Research UK identified the gaps that remain in our understanding of DKD, including how to effectively prevent and manage the disease, and highlight key areas of research where more funding is needed.
People with T1D from the most deprived areas of the UK and those from ethnic minority backgrounds are less likely to receive their essential health checks. In addition, women, people from Black heritage communities and people living in the most deprived areas are less likely to get tests and treatments for kidney disease.
Anna Morris, Assistant Director of Research at Diabetes UK, said: “Funding research in this area will generate high-quality data, increasing our understanding of the roots of health inequalities in all areas of DKD. This will open the door to fresh interventions to transform DKD prevention, diagnosis, and management for those who need it most. The importance of an annual kidney check for all individuals with diabetes cannot be overemphasised. Ensuring equal access to these checks is a vital part in addressing existing health inequalities.”
During the workshop, experts by experience living with diabetes and kidney disease shared their experiences of diagnosis and care, demonstrating the scale of the challenges that people living with DKD face.
Daniel Newman has lived with T1D age ten and experienced kidney failure in 2018, said: “Managing chronic kidney disease (CKD) alongside type 1 diabetes has been a complex journey. It is vital to establish links with underserved communities to empower individuals like me to advocate for coordinated care and shared decision-making. Participatory action research is key to developing strategies that improve many aspects of a CKD diagnosis including medication adherence and care delivery. Personalised treatment approaches that consider the diverse subtypes of kidney disease and embrace multi-ethnic perspectives are essential for meaningful progress.”
Quotes from interviews with experts by experience were collected and grouped to help identify which areas of healthcare the workshop should focus on to investigate research themes.
The six key priorities identified are:
To address these six priority areas and drive forward our understanding of the gaps in research into diabetes and kidney disease, this collaborative paper presents some research recommendations. These include defining the barriers to achieving personalised prediction and prevention tools, identifying and reducing health inequalities which lead to underrepresentation in research and differences at all stages of care, and empowering people to understand their conditions and support self-management.
Dr Caroline Schmutz, Head of Research Partnerships at Breakthrough T1D UK, said: “This important exploratory paper sheds light on the many challenges presented by diabetic kidney disease (DKD), from screening and diagnosis through to treatment and care. Insights from people with lived experience of DKD demonstrate the lack of awareness that kidney disease is a complication of diabetes, as well as how invasive and impractical treatment options are. Detecting DKD early is instrumental to its prognosis. But we know that routine testing of kidney function is not happening, leading to missed opportunities for prevention and early intervention. We are calling for systematic changes, including consistent screening for signs of kidney damage and increased funding for research to improve our understanding of this complications and develop better treatments.”
This paper reflects the collaborative effort between Breakthrough T1D, Diabetes UK and Kidney Research UK to prevent people with diabetes from experiencing kidney damage.
Tracey Murray, Director of Programmes at Kidney Research UK, said: “This call to action for further research into key aspects of diabetes and kidney disease is timely and urgent. Too often we hear stories from people who didn’t know that they needed to actively look after their kidney health and whose end stage kidney disease could have been avoided.Together as a community we must prioritise:improving health literacy and awareness of the importance of kidney health with people living with diabetesensuring that everyone eligible is provided an annual uACR testinvesting in research to unlock new discoveries so we can improve how we can prevent, protect and treat DKDDeveloping kidney disease as a complication of diabetes does not have to be inevitable – we already have many of the tests and interventions to protect kidney health. We must make sure that it is available to all.”
Tracey Murray, Director of Programmes at Kidney Research UK, said: “This call to action for further research into key aspects of diabetes and kidney disease is timely and urgent. Too often we hear stories from people who didn’t know that they needed to actively look after their kidney health and whose end stage kidney disease could have been avoided.
Together as a community we must prioritise:
Developing kidney disease as a complication of diabetes does not have to be inevitable – we already have many of the tests and interventions to protect kidney health. We must make sure that it is available to all.”
Following this workshop, work has already begun to address challenges experienced by patients through targeting health inequalities and education of health care professionals to detect and diagnose kidney disease earlier.
Breakthrough T1D and Kidney Research UK and are producing vital resources to help improve awareness of kidney disease among people with T1D. By understanding the need for uACR tests at their yearly check-ups, individuals can feel more confident to ask for tests and understand the importance of the results, helping ensure any kidney damage is detected and diagnosed earlier.
Diabetes UK and Kidney Research UK are addressing the challenge of improving diagnosis through targeted education for healthcare professionals working in primary care. The online module will highlight things like the importance of uACR testing as well as improving the care people receive when visiting their GP surgery for managing their DKD. They also held a session at this year’s Diabetes UK Professional Conference aimed at educating both healthcare professionals and researchers on the historical context of inequity in research, lived experience of DKD, and everyone’s role in addressing healthcare inequalities.
The three charities are continuing to work together in this space to improve the lives for individuals with all types of diabetes and kidney disease. We are working collaboratively to increase investment, support researchers and health care professionals to address the research recommendations, and help amplify the voices of experts by experience to improve their experiences – this is just the start.
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