Motivators, barriers and incidence of screening for celiac disease in first degree relatives at 14 years after initial screening

Background: The prevalence of celiac disease (CD) is nearly 1% of the general population, but higher among first-degree relatives. Current guidelines recommend testing for symptomatic first-degree relatives and consideration of testing for asymptomatic first-degree relatives. We sought to determine incidence of follow-up testing, as well as facilitators and barriers, in first-degree relatives who participated in a Family Screening Day 2005. Method: The 272 first-degree relatives who provided initial contact information were invited to participate in this study. A self-administered questionnaire queried retesting, conversion, additional diagnosis, and relationship to the index family member. Data was analyzed using descriptive statistics. Results: Responses (n=34, 13% of the originally screened cohort) were received, 17 participants met inclusion criteria and completed the survey. The participants were predominately female (71%) and between the ages of 26-55 (59%) at follow-up. Thirteen (77%) of the 17 participants tested negative in 2005. The majority (N=9, 69%) of those initially testing negative had not been retested nearly 14 years later. Barriers to retesting were the belief that retesting was not necessary (78%) and lack of symptoms (22%). Presence of symptoms were a motivating factor for the 3 of the four individuals who did retest (75%). Conclusion: We found a low rate of retesting of first-degree relatives despite recommendations. In the light of increased incidence of celiac disease in first-degree relatives, as well as the increased risk of developing comorbidities if celiac disease is left untreated, the results of this study indicate the need for increased awareness of testing recommendations among first-degree relatives. *Correspondence to: Anne R Lee, Celiac Disease Center, Columbia University Irving Medical Center, Harkness Pavilion, 180 Fort Washington Avenue, New York, NY, USA, Tel: (212) 305-5590; E-mail: arl2004@cumc.columbia.edu