Shaping the future of diverticular disease research: The final report from our Priority Setting Partnership

Back in February, we shared topline results from our diverticular disease Priority Setting Partnership (PSP) with the medical research charity Bowel Research UK.

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.

Following two surveys, input from a steering group and a workshop, these questions were pinned down as the most important to answer through research:

  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?

Today, we are pleased to share the final report from the priority setting partnership, delving into more detail on why these questions are so important and must be urgently addressed.

A group of people stand around a table, talking to one another. There is a table in the centre of the room, with pieces of paper set out in front of green, yellow and red pieces of material.
A group of patients and healthcare professionals discuss the top 25 priorities for diverticular disease, working together to identify the top 10 priorities.

Our Chief Executive, Suzanne Hudson, said: “Currently, 1 in 3 people will be affected by diverticular disease in their lifetime and that number is rising, particularly in younger people. Despite being a common condition, it has been under-researched and there are many unanswered questions surrounding this disease.

“This PSP is a fantastic first step in ensuring that diverticular disease gets the attention it deserves, from better understanding amongst the healthcare professionals involved directly in patient care, to discovering kinder, better treatments for those living with the condition.”

A group of four people stand in a line, smiling at the camera. They are Suzanne (Guts UK), Sam (BRUK), Helen (Guts UK) and Lindsay (BRUK). There is a blue pop up banner behind them that reads: Diverticular Disease Priority Setting Partnership (PSP).
Suzanne Hudson, CEO at Guts UK is pictured with Sam Alexandra Rose, Patient and Public Involvement Manager at Bowel Research UK; Helen West, Patient and Public Involvement and Engagement Officer at Guts UK; and Lindsay Easton, CEO at Bowel Research UK.

 

Lindsay Easton, CEO of Bowel Research UK, said: “Through this Priority Setting Partnership, we have witnessed the power of bringing together diverse voices – patients navigating uncertainty about their condition, carers providing essential support, and clinicians striving to deliver the best possible care despite limited evidence-based guidance.

“The viewpoints from patients, carers and clinicians shared in this report say it all – despite diverticular disease being a common condition, it has a huge, often overlooked, impact on people’s lives. It’s clear that the uncertainty in how best to manage and treat the disease creates anxiety and adds to the burden of living with or treating the condition. This needs to be urgently addressed through 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 join Bowel Research UK’s Patients and Researchers Together Network.

 

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