What doctor and hospital data can tell us about IBD

What the research looked at?

This grant funded a series of studies into GP and hospital data to reveal new information about people with IBD. It looked at historical medical records and attempted to draw conclusions and identify patterns. 

The studies looked at a number of key areas: misdiagnosis of IBD as IBS, prevalence and incidence of IBD in the UK, the risk of venous thromboembolism (blood clots) in people with IBD, pregnancy, and the use of surgery and medications. 

Conclusions: 

Misdiagnosis of IBD Newly diagnosed Inflammatory Bowel Disease (IBD) patients were three times as likely to have a previous diagnosis of Irritable Bowel Syndrome (IBS) than the general population. It suggests IBD is being wrongly diagnosed before it is eventually recognised. 

Incidence 
The occurrence of IBD has been increasing in the UK since 1992 (the time period studied), with roughly a 7% increase in diagnosis year-on-year. Over one in three cases was classified as Crohn's, over half as Ulcerative Colitis (UC) and the remaining one in ten were of undetermined IBD (IBDU). The figures match those of other advanced western countries. 

Blood clots in IBD 
People with IBD were nearly twice as likely to have a deep vein thrombosis (a blood clot deep in the body) or pulmonary embolism (a blood clot in the artery supplying the lungs) than the general population. Patients were particularly at risk during hospital stays and in the weeks following, but only if their hospital stay was surgery related. 

Birth defects 
Researchers found there was no significant increased risk of babies having birth defects where the mother had IBD. 

Fertility 
On average, women with IBD had very slightly fewer children than women without the condition. This slight reduction in fertility was more marked in women with Crohn's than in women with UC. Researchers found that women with UC who had pouch surgery (an operation to remove their colon, leaving their waste to be collected in an external bag or 'pouch') had, on average, fewer babies. But they concluded this could be because women were waiting until after having children before going ahead with surgery. 

Pregnancy 
Mothers with Crohn's were more likely to have children born before their due date and have babies with low birth weights. They were more likely to experience significant blood loss during and after labour, and were more likely to choose to have a caesarean section birth. In UC, mothers were also likely to have early labours, though less so than in Crohn's. However, researchers concluded that there was no “great excess risk” to mothers with IBD related to pregnancy. 

Surgery 
There has been an ongoing slight reduction in patients with UC having colon surgery, though the reduction is small. Meanwhile prescription of steroids and drugs that suppress the immune system has increased. Researchers conclude the pattern may show a gradual lifting of the threshold for doctors to recommend surgery. 

What do the researchers think this means for people with IBD? 

Analysis of GP and hospital date can give a lot of information about IBD, and help researchers to understand more about the condition and how to manage it. 

Who led the research: The funding application was led by Dr Timothy Card, Nottingham City University, but the research was carried out by various researchers and different centres. 

Our funding: £98,939 over 24 months
Official title of the application: "An examination of aspects of the occurrence natural history and consequences of inflammatory bowel diseases utilising available electronic records."
Tags: Fertility and Pregnancy / Complications of IBD