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Celiac Disease: “”80 percent of success is just showing up”

December 9, 2019 7:00 am

“80 percent of success is just showing up” —Woody Allen

Reading a recent (brief) study (BA Blansky et al. Clin Gastroenterol Hepatol 2019; 17: 2503-4) reminded me of the quote from Woody Allen.  This study of children with Celiac disease (CD) demonstrates a high rate of children who were lost to follow-up at a leading Children’s hospital.

Key findings:

• From a randomly selected retrospective cohort (2010-2014) with 241 eligible subjects, one-fourth of children were lost to follow-up within a year of diagnosis. 22 (9%) had NO GI visits after their diagnostic procedure.
• Risk factors for loss of follow-up: sibling with CD (HR 1.90), Medicaid insurance (HR 2.19), and older age at diagnosis; those with adherence had median age at diagnosis of 8.7 years compared with 11.4 years for those lost to follow-up.
• Median time to tissue transglutaminase (TTG) IgA normalization was 17 months.  Of 141 who had recommended follow-up, 25% had elevated TTG IgA at last GI visit.

My take: These numbers should not be surprising to most clinicians.  If clinicians want to improve follow-up and outcomes, then families will need more nudging; EMRs can be configured to help in this task.

Related blog posts:

• Closer Followup for Celiac Disease & Pediatric Guidelines This post highlights poor followup in a 2012 study.
• Will Asymptomatic Patients with Potential Celiac Disease Benefit from a Gluten Free Diet?
• Ultra-short Celiac Disease
• 99% Accuracy in Non-Biopsy Celiac Disease
• Followup Biopsies in Pediatric Celiac Disease?
• How Slow Do Objective Markers of Celiac Change After Treatment? | gutsandgrowth
• Are followup biopsies necessary in celiac disease? Look beyond the headlines
• To biopsy or not to biopsy -that is the question (for Celiac disease)
• Celiac Titers and Likelihood of Celiac Disease | gutsandgrowth
• Taking One ‘Bite’ At A Time -For Celiac Diagnosis | gutsandgrowth
• Expert review: Celiac disease
• False-positive serology for Celiac disease | gutsandgrowth
• Nuance in Celiac Serology Interpretation | gutsandgrowth
• Elevated Celiac Serology Associated with Reduced… | gutsandgrowth
• Is functional pain more common in children… | gutsandgrowth
• How Accurate is Serology at Predicting Mucosal Healing in …

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Categories: Pediatric Gastroenterology Intestinal Disorder

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14 Responses to “Celiac Disease: “”80 percent of success is just showing up””

1. Nope! We keep on taking more responsibility and taking the burden of healthcare on ourselves. Patients need to be more responsible and the more we spoon feed the less responsible they become. The system as a whole has maginalzied physicians and we have too many battles and obstacles just to do the basics. Stop telling us to do more, work on the problems in the system so we will be able to take on more. We cannot be unconditional atruistic.

   By Ben Enav on December 9, 2019 at 8:27 am

   1. Just to be clear, I am not telling anyone what to do. I stated “If clinicians want to improve follow-up.” This statement is not intended to prod clinicians to change their approach though they could if they would like; in addition, it does not preclude others (including patients, families and other stakeholders) from working on this.

      By gutsandgrowth on December 9, 2019 at 8:35 am

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