Tool predicts mental health and treatment needs for new inflammatory bowel disease patients

More than half a million patients in the UK have inflammatory bowel disease (IBD), and research suggests that up to 30% experience mental ill health as a result. Now, a new study outlines how many of the 25,000 new patients diagnosed each year could receive more tailored mental health support thanks to a simple tool that identifies psychological distress and predicts disease severity.

The paper published in Frontiers in Gastroenterology shows how a patient-reported questionnaire called IBD Disk can detect anxiety and depression symptoms from the outset of a patient’s diagnosis for the inflammatory condition.

Led by researchers at the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust, delivered through the National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre (BRC), this new paper shows how early use of the IBD Disk questionnaire can help forecast which patients are likely to experience more severe physical and mental health outcomes over the following year.

The IBD Disk is used in clinical practice to help patients with IBD track how their condition affects different aspects of daily life, such as energy levels, sleep, and emotional wellbeing.

The Birmingham study is the first to show that the tool can be used at the point of diagnosis to identify patients at risk of mental health challenges and predict who may need more intensive treatment.

This dual-purpose use - both as a mental health screener and a predictor of disease trajectory - could help clinicians intervene earlier and personalise care more effectively.

Dr Peter Rimmer, lead author of the study, researcher at the University of Birmingham and Consultant Gastroenterologist at University Hospitals Birmingham NHS Foundation Trust said: “This is the first time we’ve shown that the IBD Disk can act as both a mental health screener and a predictive tool for clinical outcomes at the very start of a patient’s journey.

“The findings support the use of the IBD Disk not only as a disability tracker, but as a proactive tool to guide early treatment decisions and mental health support. It’s a simple intervention that could help personalise care and reduce long-term burden on the NHS.” 

Mental health conditions more common for IBD patients

Mental health conditions such as anxiety and depression are more common in people with established IBD than in the general population, with some studies suggesting that 20-30% of patients are affected by mood disorders.

However, very few studies have been undertaken among patients when they are first diagnosed, when new IBD symptoms and uncertainty around diagnosis can contribute to psychological distress.

This study found that patients with higher levels of disease-associated physical disability and psychological distress at diagnosis were more likely to need escalating treatments such as stronger medication or surgical interventions, or require an emergency admission to hospital later on - adding to growing evidence that early identification of these symptoms could play a key role in improving long-term outcomes for people with IBD.

The study followed 188 patients attending a rapid-access clinic for suspected IBD who were subsequently diagnosed with either Crohn’s Disease or Ulcerative Colitis. At their first visit - before diagnosis - patients completed the IBD Disk, and a subgroup also completed the Hospital Anxiety and Depression Scale (HADS) to assess mental health. After diagnosis, patients were treated according to standard clinical guidelines and followed for 12 months.

Researchers analysed whether scores on the IBD Disk, particularly in the “Emotions” domain, could identify patients with moderate to severe anxiety or depression symptoms, and whether those scores predicted the need for advanced therapies, hospitalisation, and persistent disease activity.

Statistical analysis showed that an “Emotions” score of 7 or higher was highly correlated with moderate to severe depression symptoms. Patients with higher IBD Disk scores at diagnosis were significantly more likely to experience poor clinical outcomes, especially those with ulcerative colitis. Where medical treatments were not effective and their IBD remained active, patients were more likely to experience ongoing symptoms of psychological distress.

The study involved collaborators from Hoffmann-La Roche, Beaumont Hospital Dublin, and Royal Wolverhampton NHS Trust. Hoffmann-La Roche provided funding for the study and the Roche author participated in manuscript writing, review and editing.