Objectives: Pediatric inflammatory bowel disease (IBD) is a complex inflammatory condition of the gut. Diagnosing IBD involves distinct longitudinal periods from first symptoms to primary care assessment, tertiary care referral, and then endoscopic confirmation. The term diagnostic delay (DD) is used if these periods are prolonged. The aim of this review was to amalgamate DD data for children with IBD, and identify factors associated with prolonged DD. Methods: Six health literature databases were searched (December 2020). Inclusion criteria for papers were children diagnosed with IBD before the age of 18 years, DD central tendency data, and to report a central tendency of their DD data, cohort >10 children. For analysis, all data were weighted by cohort sample size. Results: Searches identified 236 papers, and 26 were included in the final analysis with a pooled cohort of 7030 children. The overall DD periods were IBD 4.5 months [Interquartile range (IQR) 3.6–8.7 months], Crohn disease (CD) 5 months (IQR 4–7.2 months), and ulcerative colitis/indeterminate colitis/IBD-unclassified (UC/IC/IBDU) 3 months (IQR 2.2–4.9 months). The difference between subtypes was significant (P < 0.001), with shorter DD for UC/IC/IBDU than CD (P < 0.001) and IBD (P < 0.001). DD periods were longer for CD than IBD (P < 0.001). DD decreased over time for IBD (P < 0.001) and UC (P < 0.001) but the trend suggested an increase for CD (P 0.069). Conclusions: This data can be used to benchmark DD for children with IBD. Individual centers could determine whether improvements to awareness or infrastructure may reduce DD in order to minimize the risk of poor outcomes.

Diagnostic delays (time from the first symptoms to diagnosis) are common in inflammatory bowel disease (IBD) and may lead to worse disease progression and treatment outcomes. This study aimed to determine the duration of diagnostic delays (DD) and to explore associated factors in a cohort of children with IBD in New Zealand. In this study, patients with IBD diagnosed as children and their parents/caregivers completed questionnaires on the patients’ medical history, diagnostic experience, and demographic characteristics. The parent/caregiver questionnaire also included the Barriers to Care Questionnaire (BCQ). Patients’ healthcare data was reviewed to summarise the history of clinical visits and determine symptoms. Total DD, healthcare DD, patient DD and parent DD were derived from the primary dataset. Factors associated with the different types of DD were explored with a series of simple linear and logistical ordinal regressions. A total of 36 patients (Crohn’s disease 25, ulcerative colitis 10; male 17) were included. They were diagnosed at a median age of 12 years (interquartile range (IQR) 10–15 years). Total healthcare delay (from first healthcare visit to formal diagnosis) was median (IQR) 15.4 (6.5–34.2) months. The median (IQR) specialist-associated delay was 4.5 (0–34) days. Higher household income was associated with shorter healthcare delay (p < 0.018), while lower overall BCQ scores (indicating more barriers experienced) were associated with longer total healthcare DD. Higher scores in each subscale of BCQ (Skills; Pragmatics; Expectations; Marginalization; Knowledge and Beliefs) were also significantly associated with shorter total healthcare delay (p < 0.04). This study found substantial diagnostic delays in paediatric patients with IBD and identified significant associations between longer total healthcare diagnostic delays and overall household income and higher self-reported barriers to accessing healthcare.