BACKGROUND: An ever-increasing number of children in Canada are being diagnosed with
celiac disease (CeD). Clinical practices regarding follow-up care of CeD are not well known.
OBJECTIVE: To determine current practices regarding follow-up of Canadian pediatric patients
with CeD.
METHODS: All pediatric gastroenterologists in Canada were invited to complete an online
survey.
RESULTS: 73/131 (55.7%) pediatric gastroenterologists completed the survey. 93.0% practiced
in tertiary centres, 41.1% have 0–10 years of gastroenterology experience, and 74.0% care for
patients with CeD, with 46.3% having 11–50 patients in practice and 35.2% having >100
patients. Initial education on gluten-free diet (GFD) is provided by dietitians (88.9%) and
physicians (61.1%). 87.0% offer a virtual education session. 50.0% offer group sessions. Followup post GFD education was offered by all respondents [involving physicians (87.0%) and
dietitians (50.0%)]. Routine follow-up care beyond the first year is provided by 88.9% and is
mainly led by gastroenterologists (81.3%). Follow-up is continued until adulthood by 37.0%,
while 45.7% individualize follow-up based on patient-specific factors. Of those transitioning
care, 97.3% give long-term monitoring recommendations to the primary care provider (PCP).
98.1% of respondents recommend screening first degree relatives for CeD. Transition of care is
guided by normalized TTG-IgA antibody (87.1%), normal growth (83.9%), absence of
symptoms (74.2%), GFD understanding/adherence (71.0%), access to primary care (74.2%) and
absence of nutritional deficits (64.5%). Re-referrals after transition of care are uncommon
(62.1% very rare/rare).
CONCLUSIONS: While Canadian pediatric gastroenterologists are generally consistent in
offering initial follow-up of patients with CeD, only 34.0% routinely follow patients until
adulthood. Practice around transition of care to the PCP varies widely with respect to both timing
and clinical factors considered. Standardized recommendations may promote more consistent
care across the country and provide a basis for resource allocation