Measuring the impact of Inflammatory Bowel Disease on food-related quality of life

What this research looked at

Food plays an important part in people’s lives, it can often be a social occasion providing pleasure and enjoyment. However, people with IBD may find that their relationship with food changes, especially if food can trigger their symptoms.  There can be all sorts of social and psychological impacts. 

Previous research by this group looked at the effect that IBD has on ‘food-related quality of life’. This research found that many people felt isolated, stressed and anxious when it came to food. As a result, the group made a questionnaire to measure the impact of IBD on people’s relationships with food.  This was called the food-related quality of life questionnaire ‘FR-QoL-29’. 

In this project, the researchers wanted to understand how many people with IBD are affected by problems with food-related quality of life. To do this, they asked 1525 people with IBD to complete the FR-QoL-29 questionnaire. This was with the hope of finding out what the most common problems were, and how many people overcame them.

The researchers used the results from the FR-QoL-29 to develop a website to help people with IBD.  Alongside this, joint patient and healthcare professional feedback meetings were held. Patient stories were recorded so that people with IBD and healthcare professionals could understand the issues and consider how best to resolve them. This made sure the website was created with the people it was designed for.

In the final part of this research, the website was tested on volunteers who had IBD and struggled with food-related quality of life. This was done to see if using the website could help improve their problems.   

What the researchers found

The researchers found that reduced food-related quality of life is widespread in people with IBD. They also found that there is variation in how much people are affected. People who have low food-related quality of life are more likely to have flare-ups and feel distressed about their IBD. They are also more likely to not eat enough micronutrients or fibre.

The results from the questionnaire showed that people needed information about food-related issues. This need was confirmed by the feedback meetings. As a result, the website content focused on this topic.

When the website was tested, the researchers found it improved food-related quality of life. The volunteers who used the website had a higher FR-QoL-29 score, compared to those who didn’t use the website. The researchers will now test the website on more people, to see if they can reproduce these results.

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

This study helps people to understand the quality of life issues faced by people with IBD when it comes to food and eating. This research shows quality of life could be improved by interventions like a website. The researchers hope to develop the website further to increase its potential for helping people with IBD.

Scientific publications

• Food-related quality of life is impaired in inflammatory bowel disease and associated with reduced intake of key nutrients - PubMed (nih.gov)
• P121 Characterising and managing issues with food-related quality of life in inflammatory bowel disease: a qualitative study of patients and healthcare professionals -  Journal of Crohn's and Colitis | Oxford Academic (oup.com)
• P192 Prevalence and factors associated with impaired food-related quality of life: a cross-sectional survey of 1223 people with inflammatory bowel disease - Journal of Crohn's and Colitis | Oxford Academic (oup.com)

Who lead the research: Professor Kevin Whelan, Kings College London
Our Funding: £115,000
Duration: 24 months 
Official title of the application: Measuring the burden of food-related quality of life in Inflammatory Bowel Disease: developing and testing interventions that are relevant to, and designed by, people with IBD. 
Tags: Food