Understanding the extent of, and reasons for, diagnostic delay in inflammatory bowel disease

Abstract

Background: Inflammatory Bowel Disease (IBD) is a complex chronic condition affecting the gastrointestinal (GI) system and is sub-classified into Crohn’s Disease (CD) and Ulcerative Colitis (UC). Patients with IBD can present with a multitude of symptoms, making the diagnosis challenging and frequently resulting in delays.
Aim & objective: The aim of this research was to better understand the extent of, and reasons for, diagnostic delay in IBD. The first objective was to establish the extent of which the diagnosis of IBD is typically delayed and any characteristics which may be related to this. The second objective was to explore the individual experience of delay, including possible contributing factors for delay as well as any impact of delay on the patient.
Methods: Two distinct methods were used. A systematic review was conducted to identify articles that reported a time-period of diagnostic delay of IBD. A narrative synthesis was then used to present the extent of IBD and explore consultation and healthcare factors for delay, which is defined below. Secondly, interviews were conducted with participants who self-reported a delay in IBD diagnosis, in order to explore this delay from their perspective. Participants were asked their opinions on factors which may have contributed to their delay and any consequences of this delay. Misdiagnoses they had been given before their IBD diagnosis was also discussed. Thematic analysis was applied to this dataset.
Results: For the systematic review, 7570 articles were sourced from the search following de-duplication. 5127 and 2143 articles were excluded following title and abstract review respectively. Of the remaining 284 articles for full-text review, 35 met the inclusion criteria. The median values of diagnostic delay were between 2 and 5.3 months for IBD, 2 to 26.4 months for CD and 2 to 12 months for UC. Consultation delays, defined as the time between the onset of patient symptoms and them seeking medical advice, ranged from 1 to 8.6 months in CD and 0.7 to 1.9 months in UC.
Healthcare delays, the time between patients seeking medical advice to receiving a diagnosis, were 0.7 to 20.8 months and 0.2 to 1.1 months for CD and UC respectively. From interviews with sixteen participants, irritable bowel syndrome (IBS), gastroenteritis and mental health conditions were commonly reported misdiagnoses. Participants cited a perceived insignificance of symptoms, fear and embarrassment as reasons why they delayed seeking medical advice. Patient-reported reasons for healthcare delays included GP reluctance to refer to secondary care and prolonged, ineffective management. Participants described experiencing issues with waiting lists for appointments and delayed diagnostic procedures. Some participants felt their delay had negatively impacted on their diagnosis, including a need for stronger medication or surgery.
Discussion: The overall diagnostic delay of IBD is extensive but varies considerably. Delay seems to be worse in CD than UC, particularly regarding healthcare delays. This is also supported by the interview findings.