A major study aiming to improve outcomes for people living with inflammatory bowel diseases (ulcerative colitis and Crohn’s disease) has significantly improved patients’ experience of care.
The three-year project, known as AWARE-IBD, aimed to re-design inflammatory bowel disease (IBD) services, shaped by those who use them. While the project was delivered in Sheffield, the learning from the project will lead to better outcomes for people who live with Crohn’s and Colitis across the UK.
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.
The study, led by Professor Alan Lobo, a consultant gastroenterologist at Sheffield Teaching Hospitals NHS Foundation Trust, was part of the Health Foundation’s Common Ambition programme where people, families, healthcare professionals and researchers work together to improve healthcare and co-design change.
More than 600 patients receiving care at Sheffield’s specialist Inflammatory Bowel Diseases Unit took part in a ‘What Matters to You?’ survey and co-designed a national toolkit to support communication with their healthcare team.
The study team also worked with community leaders and groups to reach underserved communities who are proportionately more likely to be admitted to hospital because of their condition.
The study findings showed that fewer people living with inflammatory bowel disease taking part in the study were admitted to hospital, with patients also telling researchers that access, communication, and patient-centred care were their top priorities.
Underserved communities also highlighted barriers to care including language, communication, mental health and stigma, continuity with primary care, and awareness of cultural considerations
Professor Alan Lobo, consultant gastroenterologist at Sheffield Teaching Hospitals NHS Foundation Trust and chief investigator of the study, 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.
“The fact that our work has been recognised nationally as exemplary 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.”
Andy Selman, 63, who lives with Crohn’s, said: “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."
