Survey of Pediatric Health Care Providers on Their Knowledge of Celiac Disease Confirms the Need for Educational Initiatives

Abstract

Purpose: In 2005, guidelines and consensus statements on celiac disease (CD) were published by NASPGHAN, the NIH and the CDHNF. Aim: To conduct a survey of pediatric health care providers and endocrinologists in order to assess their level of knowledge of CD prior to the publication of these educational initiatives. Methods: A 17 item peer-reviewed questionnaire was designed by the authors to assess the understanding of appropriate screening tools and the populations that should be screened for CD. The survey was administered via the internet to 207 US physicians (87 family practitioners, 90 pediatricians and 30 endocrinologists) via Epocrates. Response rates were 100%. Results: Only 31% of respondents chose either IgA anti-human tissue transglutaminase or anti-endomysial antibody as the most appropriate first line-screening test for CD. A majority (51%) chose either IgA or IgG antigliadin antibody. Only 48% recommended an intestinal biopsy be performed in those with positive serology to confirm the diagnosis prior to starting the gluten-free diet. Only 23% identified 4 conditions associated with CD among a list of 5. Iron deficiency was the most commonly recognized sign (85%) of CD. 41% responded that type 1 diabetics should be screened, while 29% felt that they should not. The principal rationale against screening diabetics in this subgroup was unknown (45%). Only 8% chose the recommended strategy for re-screening diabetic patients. Just 6% correctly identified HLA DQ 2 and DQ 8 heterodimer as useful to rule out the diagnosis of CD if negative. Although hereditary factors were known to be a risk for development of CD in the majority (88%), only 18% were aware of statistics to counsel patient's families. Finally, 61% recognized the need for a strict, life long gluten-free diet in affected patients. A Doc Alert email summary of the findings was sent to 35,000 Epocrates subscribers. Conclusions: The recent educational intiatives on CD were much needed. Improved awareness of the appropriate serological testing for CD, the utility of HLA testing, requirement to confirm the diagnosis with an intestinal biopsy, and treatment by life long gluten free diet should continue to be the focus of physician education programs. The reasons for non-referral for biopsy require elucidation. A repeat survey is planned to assess the impact of recent initiatives on physician knowledge of celiac disease.