January 07, 2019
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Many children with celiac disease are lost to follow-up

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One-quarter of children with celiac disease were lost to follow-up within a year of diagnosis, and some failed to even see a gastroenterologist after their diagnostic biopsy, according to research published in Clinical Gastroenterology and Hepatology.

Jocelyn A. Silvester, MD, PhD, of the Harvard Celiac Disease Program and Boston Children’s Hospital, and colleagues wrote these high rates of loss to specialist follow-up could indicate some failings in how children with celiac disease are managed.

“Although guidelines recommended dietitian education regarding a [gluten-free diet] and annual GI follow-up visits many may not be receiving appropriate treatment as 1 in 6 patients did not receive [gluten-free diet] education, and 9% had no GI follow-up after diagnosis,” they wrote. “It cannot be assumed that patients lost to GI follow-up are doing well nor that they receive specific follow-up in primary care.”

To assess adherence to guidelines for dietitian consultation and follow-up for celiac disease, Silvester and colleagues analyzed data from a retrospective cohort of 241 patients (median age 9.7 years; 63% female) diagnosed with biopsy-confirmed celiac disease at Boston Children’s Hospital between 2010 and 2014. They reviewed records from diagnosis through the end of 2017 to allow for a minimum of a three-year observation period. They considered any patient who did not have a GI visit for more than 18 months lost to follow-up.

Researchers found that one-quarter of patients were lost to follow-up within a year, and 9% (n = 22) had no GI visits after diagnosis. They also found that having a sibling with celiac disease (HR = 1.9), using Medicaid (HR = 2.19), and rescheduling or not attending more than 50% of appointments (HR = 2.43) were all associated with loss to follow-up.

Investigators determined that patients who were lost to follow-up were older at diagnosis compared with patients who stuck with follow-ups for longer (median 11.4 vs. 8.7 years; P = .01), and patients who reached 18 years and continued with follow-up were diagnosed at a younger age than those who did not (median 14.4 vs 16.2 years; P < .01).

Silvester and colleagues wrote that children who are lost to follow-up so quickly after diagnosis might not get the education they need to obtain the skills required to adhere to a gluten-free diet.

“Children who are inadequately adherent to a [gluten-free diet] are subject to gluten exposure and persistent mucosal damage, which is associated with complications of [celiac disease],” they wrote. “Establishing a pattern of regular GI follow-up for [celiac disease] during childhood may establish the habit of continuous, lifelong follow-up and improve long-term outcomes.” – by Alex Young

Disclosures: Silvester has received consulting fees from Takeda and research support from Biomedal SL and Glutenostics LLC. Please see the full study for all other authors’ relevant financial disclosures.