Previous studies have documented numerous deficiencies in the care of children with celiac disease, particularly with regard to followup. A recent study (B Sparks et al. J Pediatr 2020; 216: 32-6) demonstrates that using a prospective patient registry can improve many aspects of care and allows scrutiny of other aspects for further improvement.
In this single center study with 25 pediatric gastroenterologists, the authors reviewed the experience in establishing their “Celiac Care Index.”
- There was improved adherence: 77%–>89%
- Improved rates of followup serology: 50–>90%
- Improved completion of agreed-upon bloodwork: testing for ALT increased from 74% to 96%, Vitamin D from 36% to 83%, and checking hepatitis B immune status from 30% to 80%
When looking at their ‘smartset’ labs obtained in most of their 145 patients, the authors note that several may not be needed:
- Iron: the authors state that serum iron is not needed in those who have had a ferritin and a CBC.
- Thyroid testing: no patients had an abnormal free T4 and very few had an abnormal TSH (8 of 120 =7%). In the subset with abnormal TSH, 5 were normal on repeat testing, 2 had previously recognized thyroiditis, and 1 had TSH elevation related to obesity.
- Hepatitis B: 80 of 115 (70%) showed a lack of immunity to hepatitis B
- Vitamin D (25-OH): 19 of 114 (17%) had values less than 20 ng/mL
- ALT: 23 of 131 (18%) had values of ≥40 U/L
- This study shows that careful tracking of patients results in better adherence with established goals and allows for useful modifications.
- More long-term followup is needed –some abnormalities, like Vitamin D, may improve with treatment of the underlying disease even in the absence of vitamin D supplementation.
- Also, a majority of children lacked an adequate immune response to hepatitis B; testing is important to determine who needs repeat immunization.
Related blog posts:
- #NASPGHAN19 Postgraduate Course (part 2)
- Celiac Disease: “”80 percent of success is just showing up”
- Closer followup for Celiac disease & pediatric guidelines
- “Gluten-Related Disorders” (Part 1)
- Celiac Disease: “Ten Things That Every Gastroenterologist Should Know” | gutsandgrowth
- Oats OK for Celiac Disease
- How Slow Do Objective Markers of Celiac Change After Treatment? | gutsandgrowth
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