When children with celiac disease become adults, follow-up care is often neglected

More than 60 percent don’t transition to established care for celiac disease as adults

By Amy Ratner, director of scientific affairs

When children with celiac disease become adults, they often don’t get needed follow-up care, a new study presented at Digestive Disease Week found.

Although children with celiac disease require follow-up and management into adulthood, the rate of transition of care is low and needs to be improved, says the study by researchers from the Mayo Clinic.

And even when these new adults see a healthcare provider, they often do not get celiac disease follow-up, the authors note.

The poster was one of two presented by researchers from the Mayo Clinic. The research in the other poster focused on using artificial intelligence to review electronic health records to identify children up to the age of 18 who have been diagnosed with celiac disease with an eye toward reducing the number of children whose care falls off in adulthood.

Celiac disease follow-up neglected

Of 100 patients included in the study who had been diagnosed as children, only 37 had established care for celiac disease as adults. Among them, 23 had a documented transition process and 14 had a follow-up visit without official transition. Of the remaining 63 patients, 53 were seen for medical care without any celiac disease follow-up, while 10 had no further documentation of having seen a healthcare provider in their records.

Of the 37 patients who were seen for celiac disease as an adult, nearly 60 percent were seen by a primary care provider, while about 40 percent were seen by an adult gastroenterologist. Patients who were seen by an adult gastroenterologist were more likely to get follow-up blood tests to monitor celiac disease and/or a biopsy to check for intestinal healing than those seen by a primary care provider.

The average age during the first visit as an adult celiac disease patient was 21 years. Neither family history nor celiac disease symptoms at the time of diagnosis had an influence on the rate of establishing care as an adult.

The study was based on children in Olmsted County who were diagnosed from 2000 to 2012 and had reached the age of at least 18 during the study period. The Mayo Clinic in Rochester, Minnesota, is in Olmsted County.

Transition of care

Study participants were considered to have had transition of care when there was documentation that they had become patients of an adult healthcare provider. Researchers also looked at data from electronic health records that included age, gender, race, family history, symptoms at presentation and follow-up information.

Further analysis is needed to understand the limitations of and barriers to transition of care and to explore the possible long-term consequences when celiac disease patients who are becoming adults don’t have good transition of their care.

The study was presented as a poster at DDW, the largest international gathering of physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery. Studies presented at DDW are sometimes preliminary and give an early look at investigations that are likely to include more details as they progress toward publication in a peer reviewed scientific journal. Studies selected to be presented at DDW go through a review process.