Prevalence and epidemiologic features of adult upper gastrointestinal Crohn’s disease over the last 30 years: a scoping review
Daniel Lupas, Navneet Natt, Reyad Elzaanoun, Yuhong Yuan, Prince Taylor, Rokhsana Mortuza, Sudheer Vuyyuru, Jurij Hanzel, Christopher Ma, Eileen Crowley, Neeraj Narula, Silvio Danese, Laurent Peyrin-Biroulet, Siddharth Singh, Vipul Jairath, Rocio SedanoAbstract
Background
Crohn’s disease (CD) is an inflammatory bowel disease (IBD) that can affect any part of the gastrointestinal tract. Although upper gastrointestinal (UGI) manifestations are well recognized in pediatrics, UGI-CD in adults has historically been underestimated. Methodological limitations, including selective endoscopy and inconsistent classification, have contributed to variable prevalence estimates.
Aims
Our goals were to summarize the prevalence of UGI-CD in adults with CD, understand demographic variations, and summarize knowledge gaps.
Methods
We conducted a scoping review of MEDLINE, Embase, and Cochrane CENTRAL (1995–November 2025) using PRISMA-ScR and JBI methodology. Eligible studies reported adult UGI-CD prevalence or related epidemiologic data. Extracted variables included prevalence estimates, site-level involvement, and demographics. Systematic reviews were included to summarize review-level epidemiologic evidence.
Results
In total, 117 primary studies and eight systematic reviews were included. Across 95 cohorts with prevalence data, the median prevalence of UGI-CD was 8.8% (IQR 3.99%-14.5%). Higher rates were observed in cohorts using systematic endoscopy and biopsy, while population-based cohorts reported lower values. Isolated UGI-CD was rare, with a median prevalence of 1.37% (IQR 0.87%-3.02%). Prevalence varied geographically and ethnically, with lowest rates in South Asian cohorts and higher rates in East Asian and Middle Eastern cohorts. Site-specific reporting was inconsistent, and few studies detailed modifiers such as smoking or family history.
Conclusions
Reported prevalence estimates of adult UGI-CD remain highly variable due to inconsistent definitions and detection strategies. Standardized, site-specific adult definitions and systematic diagnostic protocols are needed to enable cross-study comparisons and thus improve prevalence estimates and address demographic reporting gaps.