In 2023, Bowel Research UK and Guts UK teamed up to push diverticular disease up the research agenda. We set out to involve patients, their loved ones, and the healthcare professionals treating them, in telling us what researchers needed to focus on to improve prevention, diagnosis and treatment of the disease as part of our Priority Setting Partnership (PSP).
What is diverticular disease?
Diverticular disease is a misunderstood and underfunded condition. Many people have never heard of it, despite it affecting between 1 in 2 and 1 in 3 people in the UK in their lifetime.
Diverticulae are small out-pouchings from the wall of the gut. If they cause symptoms, this is known as diverticular disease, and if they become infected or inflamed this is diverticulitis. Symptoms of infection can include tummy pain, fever, constipation or diarrhoea, or blood in your poo. Though the condition is common among older people, it is increasingly affecting the younger population.
What happened as part of the PSP?
We shared a survey with our communities asking what research was needed. A steering group then reviewed and refined those questions, and removed the ones where research was already setting out to address them. A second survey asked our communities to tell us which of the remaining questions were most important to them.
A final 25 questions were taken to a workshop last week, where a group of patients, family members, and clinicians decided on these top ten research priorities for diverticular disease:
- What are the best ways to manage diverticular disease over the long-term?
- What are the best ways to identify, treat and manage flare-ups of diverticular disease?
- How and why do pouches (diverticula) form? Can this be prevented?
- Is there a way to identify which people will develop complications with diverticular disease?
- When is surgery the best option for people with diverticular disease, outside of emergencies?
- What is the best long-term diet for people with diverticular disease to maintain good health?
- What are the best ways to treat and manage pain in people with diverticular disease?
- What are the safest and most effective ways to treat diverticular disease using antibiotics?
- Does having a poor-quality microbiome (bad gut bacteria) increase the risk of developing diverticular disease? Could treating the microbiome reduce the risk?
- Why is diverticular disease becoming more common in younger people?
Sam Alexandra Rose, Patient and Public Involvement (PPI) Manager at Bowel Research UK, commented: “It has been great to see patients and clinicians offer their time to fill in the surveys and attend the final workshop to help shape future research. This is clearly an area that means a great deal to many people, and I am excited to see the new studies and treatments that emerge over time as a result of this priority list.”
Helen West, Public Patient Involvement and Engagement Officer at Guts UK, said: “We have only arrived at the top ten priorities in research for diverticular disease thanks to the passion of the patients, carers and healthcare professionals who have come together on equal footing to share their experiences and views, and to ensure that the right research is dedicated to this condition in the future. The final workshop is just the beginning and we’re excited to see where research into this condition takes us. A huge thank everyone that took part in this project, without you it would not have been possible.”
Next steps
A full report on the outcomes of the PSP will be published in the coming weeks. All of this would not have been possible without the involvement of patients and their loved ones. If you’d like to be involved in projects like this that ensure the patient voice shapes research, join Bowel Research UK’s Patients and Researchers Together Network and Guts UK’s Experts by Experience Panel to hear about future opportunities.
The final report for the diverticular disease PSP is set to be published in March 2025 and will provide further information about the experiences and decisions of patients, family members and healthcare professionals that led to these questions being prioritised as the top 10, as well as details of the additional 15 questions that will be considered for future research.