AWARE-IBD, a three-year study led by Professor Alan Lobo, Consultant Gastroenterologist at Sheffield Teaching Hospitals NHS Foundation Trust, aimed to re-design inflammatory bowel disease (IBD) services, shaped by those who use them – people with IBDs.
Although the study was delivered in Sheffield, the learning from the project will now drive forward improvements for all patients living with Crohn’s and Colitis across the UK.
It was one of four national projects funded by the Health Foundation’s Common Ambition programme where people, families, healthcare professionals and researchers work together to improve health care and co-design change.
Crohn's disease and ulcerative colitis are the most common forms of inflammatory bowel disease. They are estimated to affect half a million people in the UK, and are chronic lifelong conditions, requiring long-term care.
As part of the research, over 600 patients receiving care at Sheffield’s specialist Inflammatory Bowel Diseases Unit completed in a ‘What Matters to You?’ survey. They also co-designed a national toolkit to support communication with their healthcare team.
Researchers also proactively reached out to underserved communities who are proportionately more likely to be admitted to hospital because of their condition by engagement with community leaders and groups.
As a result, the study’s concluding findings show fewer people living with inflammatory bowel disease who took part were admitted to hospital, Patients also told researchers that access, communication, and patient-centred care were their top priorities.
Barriers to care including language, communication, mental health and stigma, continuity with primary care, and awareness of cultural considerations were key issues highlighted by underserved communities.
Professor Alan Lobo, who is based at the Royal Hallamshire Hospital and acted as the study’s chief investigator, said: “Inflammatory bowel diseases significantly impact a person’s quality of life and wellbeing, so we are extremely proud to have led this groundbreaking project.
"Through the AWARE-IBD platform patients were able to share experiences and shape efforts to improve inflammatory bowel disease services in the areas most important to people living with these debilitating conditions – access, personalised care, and communication. Fewer patients were admitted to hospital owing to flare-ups of their condition as well.
“Our work has been recognised nationally as exemplary which is also great news for Sheffield as a city. I am very proud of the team and the partnership work we undertook with underserved communities to really understand what challenges they faced when accessing care, including language barriers and difficulties with communication (including mental health and stigma) and awareness of cultural considerations.”
Crohn’s patient Andy Selman, 63, agrees that the research has been transformative: “The standard of care, diagnosis and treatment has been excellent, but it’s the very positive contribution to the quality of my life, which is not always measured as part of a medical process, that has made a difference to me. Getting the symptoms of Crohn's under control has meant that I've had far more freedom and energy to do other things that I enjoy. For example, afternoon rambles with the dog in the Peak District which I find really good for both my physical and mental health.”