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Follow-up of children with celiac disease - lost in translation?
Yael Mozer-Glassberg1, Noam Zevit, Yoram Rosenbach
1Institute of Gastroenterology, Nutrition and Liver Diseases, Schneider Children's Medical Center of Israel, Petach Tikva, Israel. yaelm3@clalit.org.il
Insights
Follow-up care for pediatric celiac disease (CD) patients is inadequate, with many lost to follow-up. Improved monitoring is crucial for ensuring adherence to a gluten-free diet (GFD) and better patient outcomes.
Area of Science:
- Pediatric Gastroenterology
- Autoimmune Diseases
- Dietary Management
Background:
- Celiac disease (CD) is a common autoimmune disorder requiring a lifelong gluten-free diet (GFD).
- Presentations of CD vary widely, necessitating comprehensive diagnostic and management strategies.
- Adequate follow-up care is essential for monitoring treatment adherence and patient health.
Purpose of the Study:
- To evaluate the presentation of celiac disease in children.
- To assess adherence to a gluten-free diet (GFD).
- To determine the adequacy of follow-up care for pediatric CD patients at a tertiary referral center.
Main Methods:
- Retrospective electronic chart review of pediatric patients suspected of CD.
- Inclusion criteria: patients seen at the institute between January 1999 and December 2008.
- Data collected: presenting symptoms, associated conditions, follow-up care, and serological outcomes.
Main Results:
- 387 children diagnosed with CD; common presentations included iron deficiency anemia, short stature, and abdominal pain.
- Only 42.7% had regular gastroenterologist visits; 35.5% were lost to follow-up.
- Patients followed at the center showed significantly better negative serology rates compared to those followed by primary care physicians (p = 0.0002).
Conclusions:
- Follow-up care for pediatric celiac disease patients at the referral center is insufficient.
- Enhanced initiatives are needed to improve regular patient follow-up.
- Improved follow-up is associated with increased adherence to a long-term gluten-free diet.
Background:
Celiac disease (CD) is a prevalent condition with a broad spectrum of presentations requiring a lifelong gluten-free diet (GFD). Our aims were to examine the presentation and adherence to a GFD as well as the adequacy of follow-up of children diagnosed with CD at a tertiary referral center.
Methods:
A retrospective electronic chart review of pediatric patients suspected of CD (n = 581) who were seen at our institute between January 1999 and December 2008 was performed.
Results:
387 children were diagnosed with CD (F/M ratio of 1.54, median age: 6.25 years). Presenting symptoms were iron deficiency anemia (n = 82, 34%), short stature (n = 59, 24.5%) and abdominal pain (n = 59, 24.5%). In 63 patients (16.3%) an associated autoimmune disease was recorded. Only 42.7% of the patients (165/387) had regular out-patient gastroenterologist visits; 22% (86/387) were followed by their primary care physician. Over 35% (136/387) were completely lost to follow-up. Negative serology on follow-up was present in 91% of the CD patients(150/165) followed at our center in comparison to 70% (60/86) in those followed up by their primary physician (p = 0.0002).
Conclusions:
At least in our referral center, follow-up of children diagnosed with CD is far from satisfactory. Initiatives aimed at improving adherence to regular follow-up are needed as this intervention is associated with a significant increase in patient compliance with a long-term GFD.
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