Quality of Life in Screen-detected Celiac Disease Patients in the United States.

BACKGROUND AND AIMS Celiac disease (CD) is increasingly diagnosed through screening of at-risk groups (relatives of individuals and associated autoimmune disorders). The impact of diagnosis and treatment on screen-detected CD patients is poorly studied, particularly in the United States. We therefore compared the quality of life (QOL) between screen-detected and symptom-detected CD patients. METHODS Patients with a known diagnosis of CD were invited to complete 3 validated survey instruments: the CD Quality of Life (CDQOL), the CD Adherence Test for dietary adherence and the general Psychological General Well-Being index. In addition, demographic details, mode of presentation, and compliance with gluten-free diet (GFD) were assessed. RESULTS The overall response rate was high at 69%. Of 226 responses received, 211 were eligible for inclusion; the median age was 47, and the median duration of GFD was 4 years. One third of the sample (71, 34%) was screen detected. Of these, 57 (80%) had a relative diagnosed with CD, whereas 14 (20%) had an associated condition. Despite being screen detected, 49 (69%) reported symptoms before diagnosis. GFD adherence was excellent and did not differ between groups. Overall, there were no significant differences between screen-detected and symptom-detected patients with regard to CDQOL, CD Adherence Test, and Psychological General Well-Being scores. CONCLUSIONS Screen-detected and symptom-detected CD patients do not differ with regard to QOL or disease adherence as measured by validated disease-specific instruments. A high proportion of screen-detected patients reported symptoms before diagnosis, which often improve with GFD.