In common with many chronic conditions, Inflammatory Bowel Disease (IBD) can impose a psychological burden on those with the condition. We know, from existing research, that this burden is not anxiety or depression, but is instead, distress.

Disease-related distress disrupts quality of life, and people with IBD find the symptoms, implications and consequences of their condition to be distressing, but the experience is often so complex that it is difficult for people to pin-point specific causes or aspects of their distress which they might need help and support with.

In 2014 we funded researchers at King's College London to develop a new IBD-Distress Scale (IBD-DS), using robust methods in partnership with people living with IBD. The resulting questionnaire enables those with the condition, and the doctors who care for them, to identify causes of distress and develop strategies for dealing with these factors.

Why is identifying distress important?

Evidence of high levels of distress may support referral for psychological therapies so being able to assess distress and offer interventions has the potential to improve the quality of life of people with IBD. We can now also move forward with research to assess sensitivity to change - whether the IBD-DS detects a change (improvement) in distress scores after an intervention.  There is also a potential role for the IBD-DS in future psychological intervention studies with people with IBD.

The questionnaire was launched as a poster presentation at the European Colitis and Crohn's Organisation annual congress in February 2018. The poster can be downloaded here. The Nova Scotia IBD Collaborative Program is using it as a research tool.

Here is the final IBD-DS questionnaire.