Delayed diagnosis of inflammatory bowel disease is linked to worse clinical outcomes

Patients who wait longest to be diagnosed with inflammatory bowel disease double their risk of adverse clinical outcomes such as scarring of the bowel, gut complications, and bowel surgery. These are the findings of the largest systematic review of global literature of clinical outcomes of inflammatory bowel disease to date. The study, led by researchers from St George’s University of London, Imperial College London, and University College London (POP-IBD research group), reviewed 101 studies representing over 100,000 people with Crohn’s disease and ulcerative colitis.

The median time from reporting symptoms to getting a diagnosis was between 8 months for Crohn’s disease and 4 months for ulcerative colitis, the two main types of inflammatory bowel disease. These long-term conditions are caused by inflammation of the digestive system that can lead to symptoms of diarrhoea, abdominal pain, rectal bleeding, and weight loss. Timely diagnosis and treatment to control gut inflammation is thought to reduce the risk of complications.

People in the quarter of the study population who waited longest after reporting their symptoms to a health professional, had a wait of 7 and 15 months for their diagnosis of Ulcerative colitis and Crohn's disease respectively. These individuals were between two and four times more likely to need bowel surgery following diagnosis. People from low- and middle-income settings also waited twice as long for diagnosis with inflammatory bowel disease.

The study is the first to systematically examine the impact of diagnostic delay on the clinical outcomes in ulcerative colitis and Crohn’s disease and highlights the global scale of diagnostic delay in inflammatory bowel disease and why timely diagnosis is a priority in improving outcomes for people with this condition.

Professor Richard Pollok, senior author on the paper from St George’s, University of London, said:

“This study highlights the need for strategies that achieve earlier diagnosis of Inflammatory bowel disease to enable more timely treatment, improved disease outcomes and quality of life.

Our findings add weight to the recently launched campaign for earlier diagnosis of inflammatory bowel disease by the charity Crohn’s and Colitis UK”

Professor Sonia Saxena, co-author from Imperial College London and GP lead on the study said:

“These findings show that delays of just few months can make all the difference and in poorer regions

of the world delays at all stages of care pathways add up to worse outcomes for those with chronic conditions like inflammatory bowel disease. “

Sarah Sleet, CEO at Crohn’s & Colitis UK, said:

“We launched our Early Diagnosis campaign because it’s taking too long for people with Crohn’s and Colitis to get diagnosed – in the UK more than a quarter are waiting over a year from first symptoms to diagnosis. This study shines a light on the terrible impact of slow diagnosis for the long term health of people with colitis and Crohn’s disease.

“The earlier we diagnose, the earlier we can treat and the better people do, so we’d urge everyone to see their GP as soon as symptoms appear. This is why we have developed an online symptom checker to direct people to reliable health advice. It can also send you a letter for your GP to make talking through symptoms easier – helping to cut through the taboos which have kept people suffering in silence.

“Most people diagnosed with Crohn’s and Colitis are of working age. If treatment is delayed and the likelihood of stronger medication, hospital admissions or surgery is increased, not only individual patients bear the cost, but also our hard-pressed NHS and our economy in lost working days.”


Manuscript Number: APT-1428-2022.R2

Title: Systematic review with meta-analysis: Time to diagnosis and the impact of delayed diagnosis on clinical outcomes in inflammatory bowel disease

Authors: Jayasooriya, Nishani; Baillie, Samantha; Blackwell, Jonathan; Bottle, Alex; Creese, Hanna; Petersen, Irene; Saxena, Sonia; Pollok, Richard