Irritable bowel syndrome (IBS) is underdiagnosed, with significant gender and racial/ethnic disparities in who seeks help for their IBS syndromes and whether they end up receiving a formal IBS diagnosis, according to a new study.

“Our study showed that among US adults who met Rome IV criteria for IBS, most had sought care, but only about one third of these individuals reported receiving an IBS diagnosis,” senior author Lin Chang, MD, Walter and Shirley Wang Endowed Chair and Vice-Chief, Vatche and Tamar Manoukian Division of Digestive Diseases, David Geffen School of Medicine at UCLA, told Medscape Medical News.

“We also found important disparities: Women were more likely than men both to seek care and to receive an IBS diagnosis, and Black/African American respondents were less likely than White respondents to report receiving an IBS diagnosis, even though healthcare-seeking behavior was similar by race,” continued Chang, who is also the Program Director of the UCLA Gastrointestinal (GI) Fellowship Program. “Hispanic respondents also had numerically lower diagnosis rates than non-Hispanic respondents, although this difference didn’t reach statistical significance in the fully adjusted analysis.”

She feels the findings have important implications for clinicians. “Be mindful that IBS may be underrecognized in some populations, particularly in men and in Black patients, and to rely on a careful, criteria-based diagnostic approach rather than assumptions about who ‘typically’ has IBS.”

The study was published online in Clinical Gastroenterology and Hepatology.

Women Seek More Care, Receive More Frequent Diagnosis

Chang said the research team was “motivated to conduct the study by the fact that IBS is common and burdensome, yet there has been relatively little US population-level research examining whether sex, race, and ethnicity influence who seeks care and who ultimately receives a diagnosis.”

To investigate the question, they conducted a post hoc analysis of data from the 2020 US National GI Survey II (NGIS II). Of these the 88,067 participants in that original study, 6.1% (n = 5414; 63.3% women; 79.5% White individuals; 87.4% non-Hispanic individuals) met the Rome IV IBS criteria and were included in the analysis.

The survey included questions regarding demographics, socioeconomic status, employment, healthcare-seeking behaviors, and comorbidities. Those with IBS completed the Rome IV IBS questionnaire to assess symptoms over the previous 3 months, as well as other questions regarding past health care provider-based diagnosis and IBS symptom severity.

Women were more likely than men to seek healthcare for their symptoms (73.3% vs 68.7%; P = .008). A total of 32.9% received a diagnosis of IBS, with women more likely than men be diagnosed (36.5% vs 26.2%; P < .001).

This finding “may partly contribute to the perceived sex gap in IBS prevalence,” the authors commented.

Sociocultural factors may also play a role, they suggested, with “traditional gender norms influencing healthcare-seeking behaviors.” For example, men may regard seeking healthcare as “inconsistent with societal expectations of masculinity.”

The True Magnitude of Underdiagnosis

Healthcare-seeking behavior was similar across all racial and ethnic groups, but there were notable differences in rates of IBS diagnosis: 35.0% of White vs 24.6% of Black/African American respondents were diagnosed (P = .002). Fewer Hispanic than non-Hispanic respondents received an IBS diagnosis (25.6% vs 34.0%; P = .084).

“Notably, Black/African American respondents were more likely to seek healthcare for abdominal pain, yet less likely than White or Asian respondents to receive an IBS diagnosis,” the authors commented. These observations are likely “influenced by characteristics of the US healthcare system, in which access to and quality of care is diverse and closely linked to factors such as geographical location, insurance coverage, socioeconomic status, and continuity of primary care.”

The observations “align with healthcare disparities seen in other GI disorders such as inflammatory bowel diseases, GI bleeding, colorectal cancer screening, and liver disease, in which individuals from racial and ethnic minorities face delays, limited access, and poorer outcomes compared with White individuals.”

The authors suggested that cultural biases, historical misconceptions about which types of patients are affected by IBS stigma (ie, the perception of IBS as a “less legitimate medical condition”), and reluctance to disclose symptoms may also contribute to lower diagnosis rates in Black patients.

Over two thirds of survey respondents met IBS symptom-based diagnostic criteria but had not received a formal IBS diagnosis.

This finding “highlights a substantial gap between symptom-defined IBS and clinical recognition in real-world practice, which may be exacerbated by the stricter diagnostic criteria of ROME IV relative to ROME III,” the authors speculated. “Moreover, given that diagnostic approaches used in routine care are often less stringent and less standardized than Rome IV, the true magnitude of underdiagnosis in clinical practice is likely even greater than observed here.”

Study limitations include the unequal sample sizes across demographic groups, the survey’s English-only format, and reliance on self-reported diagnoses. Nevertheless, the authors believe their study has important implications.

“Our findings suggest that disparities in diagnosis are not explained simply by whether patients seek care because Black respondents sought care at similar rates yet were still less likely to report receiving an IBS diagnosis,” Chang said.

For healthcare systems, “the broader implication is that structural factors, such as access, continuity of care, insurance, communication, and diagnostic practices, may contribute to inequities in recognition of IBS. Improving equitable diagnosis matters because the lack of a formal diagnosis can affect downstream care, including access to appropriate treatment,” Chang added.

Be More Intentional About Eliciting Symptoms

Commenting for Medscape Medical News, Kyle Staller MD, MPH, director of the Gastrointestinal Motility Laboratory at Massachusetts General Hospital, Boston, said that the study “adds to a growing body of literature reminding us that disparities in IBS are not simply a function of who develops symptoms, but how those symptoms are interpreted, validated, and ultimately labeled within the healthcare system.”

“When viewed alongside prior work showing reduced access to specialty care and differences in management pathways for minority patients, a consistent picture emerges. Inequities are embedded across the continuum of IBS care — from first presentation to treatment decisions,” said Staller, an assistant professor of medicine at Harvard Medical School, Boston, and a member of the Clinical and Translational Epidemiology Unit.

Staller urged clinicians to be “more intentional about how we elicit symptoms and ensure patients feel heard as communication gaps may be a key driver of these disparities.”

The study has important implications for broader health systems too, highlighting “an opportunity to standardize care pathways for disorders of gut — brain interaction, with greater emphasis on equitable access to diagnosis, subspecialty care, and evidence-based treatments.”

The NGIS II study was supported by an institutional research grant from Ironwood Pharmaceuticals to Cedars-Sinai Medical Center. Chang reported serving on scientific advisory boards for Alfasigma, Ardelyx, Atmo BioSciences, GlaxoSmithKline, Ironwood Pharmaceuticals, and Vibrant Gastro; serving as a consultant for Bausch Health Companies, Inc, FoodMarble Digestive Health, Nerva, Lilly Pharmaceuticals, Pico Health, and Trellus Health; receiving research support from AnX Robotica and Ironwood Pharmaceuticals; and holding stock options with FoodMarble Digestive Health, ModifyHealth, Pico Health, and Trellus Health. Staller reported receiving research funding from Ardelyx and being a consultant for AbbVie, Ardelyx, Mindset Health, and Takeda in the last 3 years.

Batya Swift Yasgur, MA, LSW, is a freelance writer with a counseling practice in Teaneck, New Jersey. She is a regular contributor to numerous medical publications, including Medscape and WebMD, and is the author of several consumer-oriented health books.