Physicians Caring for Celiac Patients do not Routinely Recommend Screening of First-Degree Family Members.
OBJECTIVE
Screening first-degree relatives of celiac disease (CD) patients offers an opportunity to diagnose CD in a high-risk population.This study aims to determine how frequently CD patients receive a physician-issued recommendation for first-degree relative screening.


METHODS
A 12-question survey assessing whether CD patients receive a physician recommendation to screen first-degree relatives for CD, and the impact of such a recommendation, was validated with outpatients in a university gastroenterology practice ("University"). The 12-question survey was then distributed online to members of a celiac organization - the National Foundation for Celiac Awareness ("NFCA"). Results were collected over 3 months. Univariate analysis was used to compare cohort means and assess the association between demographic and diagnostic factors and first-degree relative screening recommendations.


RESULTS
87 University patients participated in the validation phase. Test-retest reliability of 4 key survey questions was high (Kappa coefficient > 0.80). The main analyses were based on data from 677 NFCA and 82 University respondents. Respondents were predominantly female, with a mean age of 45 years. Significantly more University patients received a recommendation for screening (78%vs44%,p< 0.001). Ninety-eight percent receiving a screening recommendation (both groups) discussed this with family members, leading to CD screening (University 71%, NFCA 79%) and, ultimately, a CD diagnosis (University 18%, NFCA 27%).


CONCLUSIONS
Physicians of CD patients often do not recommend screening first-degree family members. The high clinical impact of this recommendation suggests that greater physician compliance with screening may increase the diagnosis of CD in high risk individuals.
Department of Medicine, Thomas Jefferson University; 132 South 10th Street, Suite 480, Philadelphia, PA 19107, the United States.
Abhik
A
Roy
Department of Medicine, Thomas Jefferson University; 132 South 10th Street, Suite 480, Philadelphia, PA 19107, the United States.
Colin
C
Smith
Division of Biostatistics, Thomas Jefferson University; 1015 Chestnut Street, Suite M-100 Mezzanine, Philadelphia, PA 19107, the United States.
Constantine
C
Daskalakis
National Foundation for Celiac Awareness;124 South Maple Street Ambler, PA 19002, the United States.
Kristin
K
Voorhees
Division of Gastroenterology and Hepatology, Thomas Jefferson University; 132 South 10th Street, Suite 480, Philadelphia, PA 19107, the United States.
Stephanie
S
Moleski
Division of Gastroenterology and Hepatology, Thomas Jefferson University; 132 South 10th Street, Suite 480, Philadelphia, PA 19107, the United States.
Anthony J
AJ
DiMarino
Division of Gastroenterology and Hepatology, Thomas Jefferson University; 132 South 10th Street, Suite 480, Philadelphia, PA 19107, the United States.
David
D
Kastenberg
Celiac disease; Family; First degree relatives; Screening