Time to Include Inflammatory Bowel Disease as a Notifiable Disease?

We read the article by Lewis et al.1Lewis J.D. et al.Gastroenterology. 2023; 165: 1197-1205Abstract Full Text Full Text PDF Scopus (2) Google Scholar with great interest. The prevalence of inflammatory bowel disease (IBD) has continued to rise worldwide and in the United States. An often-reported number is 1.6 million Americans have IBD, which came from the Olmsted County Rochester epidemiology project study that estimated IBD prevalence in 2010.2Shivashankar R. et al.Clin Gastroenterol Hepatol. 2017; 15: 857-863Abstract Full Text Full Text PDF PubMed Scopus (292) Google Scholar A National Health Interview Survey (NHIS) examined the prevalence of IBD among the civilian, noninstitutionalized US adult population in 2015.3Dalhammer J.M. et al.MMWR Morb Mortal Wkly Rep. 2016; 65: 1166-1169Crossref Scopus (408) Google Scholar The data from the NHIS study estimated that 3.1 million, or 1.3%, of US adults have received a diagnosis of IBD. NHIS is a well-designed household survey conducted by the Centers for Disease Control and Prevention annually to monitor the health of US residents; however, because of the response rate of 55% and the self-reported nature of the diagnosis of IBD for ascertainment of rate, the IBD prevalence in the NHIS study was believed to be an overestimate of the true prevalence of IBD in United States. Our study, using the Explorys database (IBM Watson; Explorys Inc,), which contained data on nearly 34 million US residents, noted an IBD prevalence of 795.7 per 100,000 from 2013 to 2018.4Sheriff M.Z. et al.Inflamm Bowel Dis. 2020; 26: 291-300Crossref PubMed Scopus (21) Google Scholar Similarly, a study by Ye et al5Ye Y. et al.Inflamm Bowel Dis. 2020; 26: 619-625PubMed Google Scholar using 2 claims databases with 32 million participants estimated an IBD prevalence of 478.4 per 100,000 in 2016. The same authors, using an alternate case definition, determined an IBD prevalence 738.1 per 100,000,6Luther J. et al.Inflamm Bowel Dis. 2020; 26: 626-627Crossref Scopus (7) Google Scholar which is very close to the estimated IBD prevalence of 728 per 100,000 in the study by Lewis et al.1Lewis J.D. et al.Gastroenterology. 2023; 165: 1197-1205Abstract Full Text Full Text PDF Scopus (2) Google Scholar In the study published in this issue of Gastroenterology, the authors expanded on previous epidemiologic data by estimating the incidence and prevalence of IBD stratified by age, race, and sex using validated algorithms and multiple databases. However, certain questions remain. First, although the authors report age- and sex-stratified counts for IBD, we were unable to identify age-, sex-, race-, and insurance-stratified counts, which were used to estimate the final prevalence. Given this, it is not clear what the potential impact of small cell counts (ie, for certain age, sex, race, and insurance combinations, particularly for minority populations) were on their final analyses. Second, and perhaps most importantly, the data sources used in the study were convenience administration claims data designed primarily for billing and not for estimating the number of individuals with IBD in the United States. A limitation of past estimates for IBD prevalence has been the reliability of diagnoses, either because of the use of insurance and claims data or patient-reported disease status. The National Notifiable Diseases Surveillance System, part of the Centers for Disease Control and Prevention, collects nationwide data on approximately 120 diseases, including infectious diseases and noninfectious conditions from over 3000 public health departments.7Centers for Disease Control and Preventionhttps://www.cdc.gov/nndss/about/index.htmlDate accessed: October 23, 2023Google Scholar This system, which relies on notification of disease by healthcare providers to a central registry, allows for accurate assessment of changes in prevalence and incidence, which in turn influences allocation of healthcare resources and helps improve understanding of disease. The National Notifiable Diseases Surveillance System list of diseases is updated every year, and given the increase in prevalence of IBD noted in previous and current studies, it is time to include IBD as a notifiable disease to get a nationally representative estimate of IBD prevalence in the United States? Incidence, Prevalence, and Racial and Ethnic Distribution of Inflammatory Bowel Disease in the United StatesGastroenterologyVol. 165Issue 5PreviewApproximately 2.4 to 2.7 million Americans are diagnosed with inflammatory bowel diseases. The prevalence of inflammatory bowel diseases was highest among non-Hispanic Whites and residents of the Northeast. Full-Text PDF