“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.
- 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?
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