Self help for people with IBD

What this research looked at 

Distress, anxiety and depression are common in people with Inflammatory Bowel Disease (IBD).  Symptoms such as diarrhoea and pain, medication, and investigations can all cause fear and embarrassment, which can be difficult to manage, particularly when newly diagnosed.  

IBD clinics are not currently funded to offer psychological support for people with IBD to aid adjustment and self management. Some psychological interventions, such as Cognitive Behavioral Therapy (CBT) and stress management have already been developed for people with IBD. These are expensive and resource-intensive, which restricts their use and availability. Another option is through paper or online self help manuals.

The researchers developed and tested a new IBD specific self-management manual, called the QOLITI (Quality Of Life Tool for IBD). It was developed by the research team in collaboration with people with IBD, IBD nurses, and experts on self management. Each chapter of the manual addressed a different topic and provided guidance on setting goals, and accompanying tasks. It included:

• Dealing with stress
• Managing difficult or embarrassing symptoms and medical procedures
• Promoting good health behaviours
• Developing effective social support
• Coping strategies. 

A pilot trail was carried out with 63 people recruited from the IBD clinic at Guys and St Thomas’ NHS Foundation Trust. At the beginning of the study, all the participants were given a questionnaire that asked questions about their IBD, depression, anxiety and quality of life. Half the group was then given the manual to use, while the other half received treatment as usual. After eight weeks, all participants completed the questionnaires again. 

What the researchers found 

Interviews with people who received the self-management manual said they found it useful and informative. People reported that how they thought and felt about their IBD changed, and they also reported changes in behaviours, such as increasing social activities, which they had previously withdrawn from. The QOLITI overall was very well received by participants.

What the researchers think this could this mean for people with Crohn's and Colitis

The data from this study will be used to apply for further funding to test the efficacy of the self-management manual on a larger scale.

The researchers hope this will lead to publication of a new self-help manual for people with IBD. This will hopefully help people with IBD to have a better quality of life.

Who lead the research: Dr Lyndsay Hughes, Kings College London
Our Funding: £111,959
Duration: 24 months
Official title of the application:  Development and pilot testing of a self-administered intervention to target psychological distress in Inflammatory Bowel Disease