Regular celiac disease follow-up often is lacking, according to a report by Dr. Margot L. Herman and Dr. Alberto Rubio-Tapia to be published in the August issue of Clinical Gastroenterology and Hepatology.
Moreover, when follow-up visits do occur, they are likely to be insufficient, without assessment of serology or dietary compliance, added the investigators.
Dr. Herman and Dr. Rubio-Tapia, both of the Mayo Clinic in Rochester, Minn., and their colleagues looked at 5 years of medical records of doctor visits from 122 patients with celiac disease recruited through the Rochester Epidemiology Project database, which links to medical records at the Mayo Clinic and the Olmsted Medical Center. Of the 122 patients, 70% were women. The median age was 42 years.
Cases with any degree of villous atrophy, associated crypt hyperplasia, and an increased number of intraepithelial lymphocytes were confirmed by intestinal biopsy, plus clinical or histologic improvement after the introduction of a gluten-free diet, as well as positive endomysial or tissue transglutaminase antibodies.
"Celiac disease visits" were defined as visits with a primary care physician or gastroenterologist that addressed the disease, or with any other physician or midlevel provider (for example, a dietitian) who documented assessment of celiac symptoms and compliance with a gluten-free diet, and/or tested relevant celiac disease serologies.
Patients were classed as having either no follow-up or "regular" follow-up, meaning two or more celiac disease follow-up visits and two or more serologies at least 6 months apart during the 5-year study period, beginning 6 months after diagnosis. A third category, "irregular" follow-up, was defined as some follow-up visits or serologies not meeting the minimal criteria of the previous definition.
Overall, there were 314 celiac disease visits for the 122 patients during the 5-year follow-up period, mostly with primary care providers (n = 175; 56%) and gastroenterologists (n = 122; 39%).
Among patients with at least 4 years of follow-up after diagnosis (n = 113), the authors calculated that just 40 (35%) had "regular" follow-up (Clin. Gastro. Hepatol. 2012 [doi:10.1016/j.cgh.2012.05.007]).
A greater number (n = 65; 58%) had "irregular" follow-up, and eight patients (7%) had no celiac disease follow-up.
A complete blood count was assessed in 62% of all follow-up visits, and tissue transglutaminase antibodies, transaminases, thyroid stimulating hormone, and ferritin were each assessed in about one out of every two to three visits, wrote the authors.
In general, some form of serology was tested in 147 (47%) of 314 follow-up visits.
Moreover, 42 patients (37%) had at least one celiac disease visit without any documentation of gluten-free diet compliance.
Having diarrhea at time of diagnosis was significantly associated with regular follow-up (P =.02), wrote the authors, while having family history of disease was nonsignificantly associated with irregular or no follow-up (P = .11).
"Age, sex, and indication of a dietitian consult and other gastrointestinal symptoms at diagnosis (for example, bloating, nausea/vomiting, weight loss, abdominal pain) were not significantly associated with follow-up categories," they added.
And while the researchers conceded that the review was limited to patients in a distinct geographical area, "Olmsted County is a unique population in that there is tremendous access to medical care, fewer uninsured, and overall higher degrees of education and wealth," they wrote.
"These factors would likely enhance a patient’s probability of receiving follow-up medical care, implying that our estimates are an overstatement of follow-up, compared to other locations."
According to the authors, the National Institutes of Health and the American Gastroenterology Association recommend that patients be evaluated at "regular intervals" by a "physician and a dietitian," but "practice guidelines vary greatly, and many specific recommendations are not evidence based."
Neither is there consensus on whether and how often serology should be assessed, nor when or if intestinal biopsy is warranted.
Indeed, "The considerable incongruency of guidelines posed a challenge in defining the categories of follow-up."
Nevertheless, "very few patients had medical follow-up that would be in keeping with even the most lax interpretation of current guidelines."
The authors stated that there were no conflicts of interest associated with this study.