INTRODUCTION: Celiac disease is a chronic immune disorder for which the only treatment is strict life-long adherence to a gluten-free diet (GFD). Collaborative management through regular follow-up with a care team that includes physicians and dietitians may improve long-term outcomes. However, many individuals with celiac disease are lost to follow-up.
OBJECTIVE: This primary objective of this study was to identify factors associated with pediatric celiac disease patients being lost to follow-up. Secondary aims included identifying adherence to recommended care practices by both patients and providers.
METHODS: A chart review of 250 randomly selected children with biopsy-confirmed celiac disease diagnosed between 2010 and 2014 at Boston Children’s Hospital (BCH) was conducted. Follow-up records were reviewed from diagnosis to 2017. Eligible children were diagnosed prior to age 18 and did not attend BCH solely for a second opinion. Demographics, medical history, visit information, and lab results were collected using an online database.
RESULTS: Of the 241 eligible subjects (64% female, 1-17 years, median 9.7 years) the median time until lost to follow-up was 2.8 years from diagnosis (IQR, 1.0-4.7 years) with 22 subjects (9%) not attending any follow-up visits with their pediatric gastroenterologist (GI) after diagnosis and an additional 37 subjects (14%) lost within the first year. A majority of subjects (83%) attended a GFD education visit with a registered dietitian, although this was not associated with follow-up adherence (P>0.5). Excluding those who had aged out of the clinical practice, children who were adherent to follow-up had a younger mean age of diagnosis (95% CI 0.5-3.1, P<0.01). Children who were insured under Medicaid/CHIP (N=20) were more likely to be lost within one year compared to those with private health insurance (P<0.01). Celiac serologies taken at time of last clinical visit were abnormal in 25% of the subjects with available results (N=141) and the median time since diagnosis in this positive serology subgroup was 20 months (IQR, 12-29 months).
DISCUSSION: The present study illustrates that children with celiac disease are not being followed-up adequately and that identifiable disparities exist in the pediatric celiac disease population. Within three years of diagnosis, 50% of the cohort was lost to follow-up with the majority of subjects lost within the first year of diagnosis. Children diagnosed at a younger age were more adherent to follow-up compared to those diagnosed during adolescence. Factors associated with decreased adherence included reliance on public medical insurance and older age at diagnosis. Improvement in long-term management of celiac disease may be achieved by increased outreach and education.
| Identifer | oai:union.ndltd.org:bu.edu/oai:open.bu.edu:2144/30875 |
| Date | 03 July 2018 |
| Creators | Blansky, Bradley |
| Contributors | Tang, Margot, Silvester, Jocelyn |
| Source Sets | Boston University |
| Language | en_US |
| Detected Language | English |
| Type | Thesis/Dissertation |
| Rights | Attribution 4.0 International, http://creativecommons.org/licenses/by/4.0/ |
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