Back in February, we shared topline results from our diverticular disease Priority Setting Partnership (PSP) with Guts 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:
- 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?
Today, we are pleased to share the final report from the project, delving into more detail on why these questions are so important and must be urgently addressed.
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.”
Suzanne Hudson, Chief Executive at Guts UK, 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 unresearched 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.”
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.