title: Barriers impeding serologic screening for celiac disease in clinically high-prevalence populations.
abstract: BACKGROUND
  Celiac disease is present in ~1% of the general population in the United States and Europe. Despite the availability of inexpensive serologic screening tests, ~85% of individuals with celiac disease remain undiagnosed and there is an average delay in diagnosis of symptomatic individuals with celiac disease that ranges from ~5.8-11 years. This delay is often attributed to the use of a case-based approach for detection rather than general population screening for celiac disease, and deficiencies at the level of health care professionals. This study aimed to assess if patient-centered barriers have a role in impeding serologic screening for celiac disease in individuals from populations that are clinically at an increased risk for celiac disease.
  
  
  METHODS
  119 adults meeting study inclusion criteria for being at a higher risk for celiac disease were recruited from the general population. Participants completed a survey/questionnaire at the William K. Warren Medical Research Center for Celiac Disease that addressed demographic information, celiac disease related symptoms (gastrointestinal and extraintestinal), family history, co-morbid diseases and conditions associated with celiac disease, and patient-centered barriers to screening for celiac disease. All participants underwent serologic screening for celiac disease using the IgA tissue transglutaminase antibody (IgA tTG) and, if positive, testing for IgA anti-endomysial antibody (IgA EMA) as a confirmatory test.
  
  
  RESULTS
  Two barriers to serologic testing were significant across the participant pool. These were participants not knowing they were at risk for celiac disease before learning of the study, and participants not knowing where to get tested for celiac disease. Among participants with incomes less than $25,000/year and those less than the median age, not having a doctor to order the test was a significant barrier, and this strongly correlated with not having health insurance. Symptoms and co-morbid conditions were similar among those whose IgA tTG were negative and those who tested positive.
  
  
  CONCLUSIONS
  There are significant patient-centered barriers that impede serologic screening and contribute to the delayed detection and diagnosis of celiac disease. These barriers may be lessened by greater education of the public and health care professionals about celiac disease symptoms, risk factors, and serologic testing.
authors.forename: Erika M
authors.initials: EM
authors.lastname: Barbero
authors.forename: Shawna L
authors.initials: SL
authors.lastname: McNally
authors.forename: Michael C
authors.initials: MC
authors.lastname: Donohue
authors.affiliation: Department of Medicine, Division of Gastroenterology, University of California San Diego, 9500 Gilman Drive, La Jolla, CA 92093 MC 0623D, USA. mkagnoff@ucsd.edu.
authors.forename: Martin F
authors.initials: MF
authors.lastname: Kagnoff
mesh_terms: D000328:Adult; D000368:Aged; D001323:Autoantibodies / Q000097:blood; D002140:California; D002446:Celiac Disease / Q000097:blood* / Q000175:diagnosis*; D005260:Female; D019204:GTP-Binding Proteins; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007070:Immunoglobulin A / Q000097:blood*; D007182:Income; D007348:Insurance, Health; D008297:Male; D008403:Mass Screening; D008875:Middle Aged; D010342:Patient Acceptance of Health Care; D010817:Physician-Patient Relations; D000091345:Protein Glutamine gamma Glutamyltransferase 2; D012307:Risk Factors; D012698:Serologic Tests; D011795:Surveys and Questionnaires; D011503:Transglutaminases / Q000276:immunology; D055815:Young Adult
chemical_list: D001323:Autoantibodies; D007070:Immunoglobulin A; D000091345:Protein Glutamine gamma Glutamyltransferase 2; D011503:Transglutaminases; D019204:GTP-Binding Proteins