Shaping the future of diverticular disease research: The results of our priority setting partnership

In 2023, Guts UK, the national charity for the digestive system, and the medical research charity Bowel Research UK, teamed up to push diverticular disease up the research agenda. Together, 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).

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.

Top 10 research priorities revealed

A final 25 questions were taken to a workshop on Wednesday 12th February, where a group of patients, family members, and clinicians decided on these top ten research priorities for diverticular disease:

1. What are the best ways to manage diverticular disease over the long-term?
2. What are the best ways to identify, treat and manage flare-ups of diverticular disease?
3. How and why do pouches (diverticula) form? Can this be prevented?
4. Is there a way to identify which people will develop complications with diverticular disease?
5. When is surgery the best option for people with diverticular disease, outside of emergencies?
6. What is the best long-term diet for people with diverticular disease to maintain good health?
7. What are the best ways to treat and manage pain in people with diverticular disease?
8. What are the safest and most effective ways to treat diverticular disease using antibiotics?
9. Does having a poor-quality microbiome (bad gut bacteria) increase the risk of developing diverticular disease? Could treating the microbiome reduce the risk?
10. Why is diverticular disease becoming more common in younger people?

What is diverticular disease?

Diverticular disease is a misunderstood and underfunded digestive 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’s next?

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.

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, learn more about Guts UK’s  Experts by Experience Panel and Bowel Research UK’s Patients and Researchers Together Network.