Systematic Review of Diagnostic Delay for Children With Inflammatory Bowel Disease

Abstract

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.

Evolving Landscape of Paediatric Inflammatory Bowel Disease: Insights from a Decade-Long Study in North-East Slovenia on Incidence, Management, Diagnostic Delays, and Early Biologic Intervention

“…The median diagnostic delay in our study was found to be 3 months for CD and 2 months for UC, consistent with findings from other studies that commonly report longer delays for CD compared to UC [17,18,[31][32][33][34][35][36][37]. Recent investigations from El Mouzan et al [31] and Sulkanen et al [17] found median delay for CD and UC at 8 and 5 months in Saudi Arabia, and 6.6 and 4.1 months in Finland, which is slightly longer compared to our study.…”

Multicenter registry of pediatric inflammatory bowel disease from a developing country

“…One of the main findings was that PIBD children from the cohort were diagnosed earlier than children residing in Europe and Israel from the EUROKIDS registry (7.7 vs. 12.5 years in CD and 10.2 vs. 11.6 years in UC, respectively) [ 5 , 6 ]. Even with the increasing trend, time from the disease onset to the time of established IBD diagnosis in children and adults may take several months demonstrated in three recent systematic reviews [ 7 – 9 ]. Longer diagnostic delay has been associated with growth faltering, more extensive disease, and a worse response to treatment in children; [ 8 ] while a systematic review of 11 studies in 6,164 adults showed that delayed diagnosis was associated with higher chances of developing stricturing and penetrating disease, intestinal surgery in CD as well as colectomy in UC [ 9 ].…”