This blog reflects some of the reasons we wanted to undertake the Being Me with IBD study to explore the impact of IBD’s on young people’s friendship, loneliness and mental health. It also reflects our contribution to Children’s Mental Health Week 4th – 10th February 2019 and the recognition of how physical ill-health can impact on mental wellbeing.

Mental health in adults with IBD

People with inflammatory bowel diseases (IBD), including Crohn’s disease and ulcerative colitis, experience poorer mental health compared to their healthy peers. Doctors have argued that this stems from IBD being incurable, unpredictable, and from the significant side effects from the surgical and medical treatment. The number of adults with IBD who report mental ill-health is very high – about 60% – with higher rates of both anxiety and depression symptoms among those with IBD compared to healthy individuals. The risk of anxiety and depression is also higher for those whose disease is active compared to inactive[1]. However, even when medical professionals know patients are suffering from anxiety and/or depressive symptoms, few receive adequate care.[2] In the UK, only 12% of adult IBD services have a clear referral pathway for patients to access clinical psychology services[3]. This means that most adults with IBD who suffer from mental ill-health do not have access to appropriate help and support.

Is the picture any different for children and adolescent patients with IBD?

Research with young people with IBD shows they report poorer quality of life[4] [5] and experience a higher incidence of anxiety and depressive symptoms than in the general population[6]. However, there are no official reports about referral pathways for these young people; we simply have no idea whether these children and adolescents get help for these issues.

Several studies on IBD suggest that if individuals already suffer from mental ill-health, this impacts on how well they cope with IBD symptoms. In one study, just over half of individuals with IBD who reported depression said they had experienced depression before the onset of their IBD[7]. Combining that knowledge with findings from a study of children, where the authors concluded that having IBD increased the risk of developing anxiety or depression[8], we see that the relationship between mental ill-health and IBD is complex.

How can children and adolescent patients with IBD be better supported?

It is the case that IBD brings about a whole set of situations that could contribute to worsening mental health, BUT how we are feeling when those things occur also impact future mental health and IBD symptoms.  Knowing that provides clear directions for supporting people with IBD: screening should be put in place for all IBD patients, including children and adolescents, so that mental health support can be there from day one, enabling people to cope with symptoms effectively. But, we also need clear referral pathways available throughout treatment, with regular mental health monitoring.

Thanks for your interest in our study

The Being Me with IBD Study Team

[1] Mikocka-Walus et al. (2016) https://doi.org/10.1097/MIB.0000000000000620

[2] Bennebroek Evertsz et al. (2012) https://doi.org/10.1186/1471-244X-12-227

[3] Royal College of Physicians (2014) https://www.rcplondon.ac.uk/file/1122/download?token=xOdBTaIm

[4] Greenley et al. (2010) https://doi.org/10.1093/jpepsy/jsp120

[5] Engelmann et al. (2015) https://link.springer.com/article/10.1007/s10578-014-0471-5

[6] Conley, S. and Redeker, N. A (2016) https://doi.org/10.1111/jnu.12189

[7] Walker JR et al. (2008) https://insights.ovid.com/pubmed?pmid=18796096

[8] Loftus et al. (2011) https://insights.ovid.com/pubmed?pmid=21537359