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When blood tests suggest celiac disease, one third of patients don’t get appropriate follow-up testing

May 10, 2024

Beyond Celiac research shows gender and race play a role in who gets an endoscopy and biopsy 

A photo of Kate Avery, MPH, Senior Director of Coalition and Patient Engagement, in front of our poster at ISPOR 2024.

By Amy Ratner, director of scientific affairs

Nearly one in three people who have positive blood tests for celiac disease don’t go on to get the endoscopy and biopsy that confirms a celiac disease diagnosis, according to new research by Beyond Celiac.

Disparities by gender, race and, to a lesser degree, geography were found in determining who gets appropriate follow-up care after having a positive blood test result, according to an analysis of a US-based insurance claims database. The results were recently presented as a poster by Kate Avery, MPH, Beyond Celiac senior director of coalition and patient engagement, at a meeting of the Professional Society for Health Economics and Outcomes Research (ISPOR). ISPOR works to ensure that healthcare decisions are based on the best scientific research.

When endoscopies should be done

Guidelines from US organizations for gastroenterologists recommend that a positive blood test should lead to an endoscopy and biopsy, currently the gold standard for diagnosis of celiac disease in the United States for adults and children.

Beyond Celiac used a database of private health insurance and Medicare Advantage claims to determine whether the guidelines were being followed and if there were any differences by demographics. The study was based on about 19 million patients, a 25 percent representative sample of the database. Those with claims that indicated they had not been diagnosed with celiac disease were included in the analysis.

Thirty percent don’t get correct follow up

Nearly 9000 patients had a positive celiac disease blood test but only about 70 percent of those had the recommended endoscopy and biopsy. Significantly more woman than men had the proper follow up, 70 percent compared to 67 percent.

Significantly more non-Hispanic Whites, at about 73 percent, and significantly fewer non-Hispanic Asians, at about 59 percent, had the endoscopy and biopsy. It’s not clear why non-Hispanic Asians are not followed up appropriately, the study notes. Those who had unknown or missing race data also were significantly less likely to be followed up correctly. About 71 percent of Non-Hispanic Black people received proper diagnostic follow up.

Geography also played a role, with those in the Midwest and South having higher percentages of proper post-blood-test follow-up in an analysis of census regions, at about 72 percent and 71 percent, respectively. Although there are a number of celiac disease centers with physicians knowledgeable about celiac disease diagnosis and care in the Northeast, fewer patients in this region received appropriate follow up, at about 69 percent. The West had the lowest percentage at about 68 percent.

Among those with positive diagnostic celiac disease blood tests, non-Hispanic whites made up the largest group, at 71 percent, followed by Hispanics at about 10 percent, non-Hispanic Black people at about 7 percent and non-Hispanic Asians at about 3 percent. More than 8 percent of those with positive blood tests had missing or unknown race data. More women than men also had a positive blood test result.

While the study highlights some demographic disparities in who gets proper diagnostic follow-up, the reasons are not clear, the authors wrote. “Conclusions about whether the endoscopy and biopsy was missed due to the patient, provider or another cause cannot be drawn from this data,” the study says. “There are many reasons a patient may choose not to obtain the recommended endoscopy and biopsy.”

The study calls for more research to understand disparities. It was funded by Takeda Pharmaceuticals.


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