Pediatric Celiac Disease Patients Who Are Lost to Follow-Up Have a Poorly Controlled Disease

Abstract

Background: Follow-up of celiac disease (CD) patients is recommended for gluten-free diet (GFD) adherence monitoring and complication detection. We recently showed that 35% of children with CD were lost to follow-up (LTFU). We aimed to characterize LTFU population, and thus identify compliance barriers to GFD and follow-up. Methods: 50 LTFU patients were investigated using a telephone questionnaire, regarding frequency of follow-up, serology testing, and adherence to GFD (using the validated Biagi score). Fifty two regular follow-up patients served as controls. Results: LTFU patients had poor adherence to GFD (average Biagi score of 2.0 ± 1.4) compared to controls (3.0 ± 1.0, p < 0.001). Only 22% of LTFU performed periodic celiac serology testing compared to 82% of controls (p < 0.001). LTFU had higher prevalence of positive celiac serology tests (50% compared to 25% of controls, p = 0.01). Fewer LTFU were National Celiac Association members (24%) compared with controls (44%, p = 0.05). Regression analysis showed positive relationships between LTFU and poor adherence to GFD (R² = 0.26737, p = 0.001), older age at diagnosis (R² = 0.30046, p = 0.03), and non-membership in a celiac association (R² = 0.18591, p = 0.0001). Conclusion: LTFU is associated with non-adherence to GFD and positive serology. Risk factors for LFTU should be identified and addressed in order to improve patient care.

At-Risk Screened Children with Celiac Disease are Comparable in Disease Severity and Dietary Adherence to Those Found because of Clinical Suspicion: A Large Cohort Study

“…10 Other factors likely affecting dietary adherence could be the intensity and organization of follow-up, the possibility to meet a dietician, the presence of comorbidities, and celiac disease in other family members. 13,16,48 However, we found no association between the adherence and presence of concomitant type 1 diabetes in the child or celiac disease in the family. In any case, our results demonstrate that excellent adherence to the gluten-free diet is also attainable in screen-detected celiac disease patients diagnosed and followed in a well-organized clinical practice.…”

Long-term follow-up in adults with coeliac disease: Predictors and effect on health outcomes

“…The higher prevalence of seropositivity over against self-reported adherence could be caused by unrecognized lapses or via the slow normalization of high values. (13,(29)(30)(31). Previously Bardella et al found regular follow-up to improve adherence in adults (13) and Barnea et al reported similar finding in children (29).…”

“…(13,(29)(30)(31). Previously Bardella et al found regular follow-up to improve adherence in adults (13) and Barnea et al reported similar finding in children (29). The absence of such an association in Finland could be due to the high prevalence of the disease and good availability of gluten-free products, and the widespread knowledge of coeliac disease among physicians and food industry.…”

Screening for coeliac disease in children

“…In fact, adherence might depend more on how easy the treatment is, which can be affected by a number of factors. These include the price and availability of gluten‐free products, the education and follow‐up of the affected individuals and patient‐dependent characteristics, such as their education level and age at diagnosis . Therefore, a good availability of reasonably priced gluten‐free products and supportive healthcare systems could be considered as a prerequisite for wider scale screening for coeliac disease.…”