Developing a new intervention for people living with Crohn's or Colitis and abdominal pain.
If we show that interventions make a difference to IBD pain we will have a strong argument for the NHS to provide this service to people with IBD and we will be able to train IBD nurses to deliver help for pain as part of their role.
What this research looked at
Pain is a problem for many people with Crohn’s and Colitis and can have a big impact on life. It’s common during a flare-up but for up to 6 out of 10 people the pain doesn’t go away, even when Crohn’s or Colitis is in remission.
Pain in IBD isn’t well understood and there’s no agreement amongst health professionals about the most effective approach to managing it. But there is good evidence that online interventions using the principles of Cognitive Behavioural Therapy (CBT) can help people with ongoing pain in other conditions.
This study set out to understand more about ongoing pain in Crohn’s and Colitis and the psychological factors that affect it. Using this knowledge, the researchers went on to develop a specific CBT-based pain management intervention for people with Crohn’s or Colitis and tested it on a small number of people.
To achieve this the researchers:
- Looked at the evidence to find out what factors associated with Crohn’s and Colitis could be changed through an intervention.
- Carried out a large survey to develop a better understanding of how people living with Crohn’s and Colitis experience and manage pain.
- Interviewed people with the conditions to gain a deeper insight into their experience of ongoing pain.
- Developed a CBT based intervention.
- Tested the intervention with 20 people with Crohn’s or Colitis.
What this research found
The researchers confirmed that pain is a problem for many people with Crohn’s and Colitis and has a major impact on life. Low mood and pain–related thoughts such as worrying about the pain are associated with more severe pain that has a greater impact on life. More positive thinking such as acceptance and good mental wellbeing can help people to better manage this pain.
The online cognitive behavioural therapy for ongoing pain was well accepted by people with Crohn’s and Colitis. Although it didn’t change the severity of the pain it improved wellbeing and reduced mental distress. This therapy is now being tested by almost 700 people on the self-management tool IBD-Boost.
Exploring the evidence
This review of studies that had previously explored pain in Crohn’s and Colitis confirmed that factors such as depression, anxiety, and fear avoidance were important in the way pain was experienced. Some of these hadn’t been explored before so the researchers went on to find out more with a survey.
More than 200 people with Crohn’s or Colitis completed the survey which found that 1 in 3 people experienced at least moderate pain, and 4 out of 10 reported ongoing pain. People used different ways to manage pain such as heat, gentle exercise, and diet. Those who had low mood or unhelpful thoughts had more severe pain.
14 people with Crohn’s or Colitis were interviewed either face-to-face or by telephone. They reported that pain was often linked to other symptoms such as fatigue or the need to reach the toilet quickly. Many said they felt trapped in vicious cycles of anxiety, inactivity, and misunderstanding. People learned through experience what helped them to manage pain in the short and longer term.
This used techniques of cognitive behavioural therapy (CBT) and was an online 9-week session course supported by a 30-minute phone call with a therapist. People with Crohn’s and Colitis were involved in all stages of development.
Testing the intervention
20 people with Crohn’s or Colitis and ongoing pain took part in testing. Although the reports of pain experienced didn’t reduce by a large amount, quality of life and control of Crohn’s or Colitis improved. Depression, anxiety, and pain catastrophising also reduced. Interviews following the intervention showed that it was well received and easy to use. Talking to a therapist at the beginning of the therapy was welcomed as it gave a personal touch.
What the researchers think this could mean for people with Crohn's and Colitis
This research has improved the understanding of ongoing pain experienced by people living with Crohn’s and Colitis, the impact it has on life and how people try to manage this. This will help health professionals to work in partnership with people living with this symptom to provide better support.
If the researchers can show in the larger study that the intervention makes a difference to managing pain, they will have a strong argument for the NHS to provide this service for people with Crohn’s and Colitis. They also hope this work will enable people to talk more openly about this hidden problem.
Who led this research: Professor Christine Norton, King's College London. This was a PhD study by Louise Sweeney.
Our Funding: £88,668
Duration: 36 months
Official title of application: Living with chronic abdominal pain in IBD: a PhD Fellowship developing and feasibility testing IBD pain management interventions
Tags: Pain management