Abstract

Introduction: Increasing numbers are diagnosed with celiac disease (CD) due to screening because of their high risk status (relatives of individuals, autoimmune disorders). The impact of the diagnosis and treatment in screen-detected patients has not been determined for patients in the US where there is a low rate of diagnosis and greater difficulty obtaining access to a gluten-free diet (GFD). We therefore compared the quality of life (QOL) between screen-detected and symptom-detected patients maintained on a GFD. Methods: Patients completed 3 validated questionnaires: Quality of Life (CD-QOL), the Adherence Test for dietary adherence (CDAT) and the general Psychological General Well-Being Index (PGWB). These surveys were completed at support group meetings, at a celiac disease center or in response to a directed mailing. Mode of presentation, age, sex and level of education was assessed. Individuals were also asked their perceived QOL and if was glad I was diagnosed with Celiac Disease. Results: Response rate was high (74%); of 226 responses, 211 were complete. 140 were symptom-detected (mean age 47, 80% female), while 71 were screen-detected (mean age 45, 73% female). Of those screened, 57 (80%) had a relative diagnosed with CD, while 14 (20%) had an associated condition, including type 1 diabetes, thyroid disease, or osteoporosis. Respondents had adopted a GFD for a mean of 7 years, and dietician use was similar between screen-detected and symptomatic groups (55% vs 63%, p=0.56) Education level was high in both groups (91% had a college or higher education). Despite being screen-detected, 49 (69%) reported symptoms prior to diagnosis; 71% of those who were symptom-detected reported symptom improvement, compared to 54% of the screened group (p=0.16). Overall, there were no significant differences between screen-detected and symptom-detected patients when assessing CD-QOL, CDAT and PGWB scores. Both groups rated their QOL as good or excellent, 64% and 60% (p=0.59). Screened patients were less likely than symptom-detected to agree with the statement was glad I was diagnosed with CD (42% vs 64%, p=0.005). This difference remained significant on multivariate analysis, after adjusting for age, gender, dietician use, and survey location (OR 0.34, 95% CI 0.15-0.77, P=0.01). Conclusions: Screen-detected patients may have symptoms prior to diagnosis that are less likely to improve after diagnosis compared to those with symptomatic CD. However, their QOL, degree of dietary adherence and psychological wellbeing is not significantly different. Fewer screen-detected patients were glad to be diagnosed with CD.

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