Anxiety and depression are prevalent in young people with Inflammatory Bowel Disease (IBD), with young women in particular reporting a lower quality of life, and more frequent and higher levels of anxiety than their male counterparts. 

These were some of the findings of ‘Adolescents with Inflammatory Bowel Disease: Their relationship with their disease, identity and illness perceptions’ – a University of Sheffield project funded by Crohn’s & Colitis UK.

Researchers contacted people aged 16–21 to hear how they felt about living with IBD at a time when they had to negotiate many other challenges such as education, relationships, employment and leaving home. 

These people were also experiencing adolescence when their IBD care would move (‘transition’) from child into adult health services. 

According to the report: “[Transition] can be problematic as, in adult services, there is less multidisciplinary input and psychological support, and the focus is more on the individual rather than the family, where the young person begins to take responsibility for the management of their IBD.”

The study also found that young women believed the timeline of IBD to be longer, understood their IBD less, perceived their symptoms to be more “cyclical”, and their feelings about their IBD were more negative than those of their male counterparts. 

Additionally, young people who described themselves in relapse reported a lower quality of life and had a higher depression score than those in remission. 

“Young people who struggle to have their IBD understood value the support of friends and family, and are self-critical. But we also found they were resilient and strong young people,” the report stated.

“In terms of transitioning to adult services, participants reported before they transitioned that it felt like they were growing up and taking responsibility for their own IBD, but that they had some worries about losing the relationships they had established with nurses and doctors. [Those] who had already moved to adult services felt like it was their turn to take control of their IBD and that they could settle into adult services.”

What would help?

The report recommended that young people with IBD should be screened and monitored for the risk of developing depression and anxiety, and that there should be mechanisms in place to intervene early.

The researchers felt there was a need “to help young people develop ways of coping with their disease, fearing the possible consequences less, understanding IBD better, feeling more positive about their IBD and fostering self-compassion”. 

Further work is needed to examine why young women are at higher risk of suffering increased levels of depression and anxiety, and a poorer quality of life.

This research was led by Dr Georgina Rowse, senior lecturer in the clinical psychology unit at the University of Sheffield, and Dr Alenka Brooks, specialist registrar in gastroenterology at Sheffield Teaching Hospitals NHS Foundation Trust.