P3A002: Does Quality of Life and Symptom Severity Correlate with Celiac Disease Activity in Adolescents?

Background: Adolescents with a new diagnosis of celiac disease (CeD) face a unique challenge of having to navigate transformations in social relationships while also adapting to managing disease related-symptoms and a new, restrictive gluten-free diet. CeD is known to have a social burden on adult patients, but there are few studies assessing quality of life (QoL) in adolescents with CeD. Even less is known about how symptoms, QoL, and disease activity relate in these patients.

Methods: Cross-sectional survey study of adolescent patients (ages 13-18) within one year of biopsy-proven diagnosis of CeD. Adolescents who were asymptomatic at time of diagnosis were excluded. Adolescents completed the PedsQL questionnaire, a validated health-related QoL assessment with physical, emotional, social, and school functioning subscores. Parents/guardians completed the parent-proxy PedsQL. The Celiac Symptom Index (CSI), a measure of CeD-related symptoms validated in adults, was also completed by the adolescents. Serologic data (tissue transglutaminase IgA (tTG-IgA)) was collected from electronic medical record chart review and was used as a measure of disease activity. Means, mean difference, t-test, and point biserial correlations were computed to assess the association of CeD serology with CSI and PedsQL Scores. The associations were conducted separately in the adolescent sample and their respective parent/guardian sample.

Results: 54 adolescent patients and parents/guardians were surveyed. Of these, 37 had abnormal tTG-IgA. The mean CSI score was 35.9 (of possible 80), adolescent PedsQL was 78.8, and parent proxy PedsQL was 76.48 (of possible 100). Survey results from adolescents with normal tTG-IgA and abnormal tTG-IgA were compared. There were meaningful, statistically significantly differences in overall PedsQL scores (84.75 vs 77.03,r= -0.28, p=0.05), social subscores (95.42 vs 88.59,r= -0.24, p=0.02), emotional subscores (80.83 vs 66.62,r= - 0.31, p=0.03), and school functioning subscores (81.25 vs 68.89,r= -0.36, p=0.01). There was no significant relationship between tTG-IgA and the physical subscore or CSI scores. For the parent proxy PedsQL, only the subscore of school functioning showed significant difference (81.67 vs 66.81,r= - 0.31, p=-0.03).

Conclusion: The adolescents with abnormal tTG-IgA serology had lower QoL scores that were unrelated to measures of physical symptoms (CSI and physical subscore of PedsQL) This suggests more complex drivers of QoL in adolescents with CeD that are not related to physical symptoms but are still associated with increased disease activity. To better contextualize this finding, further research is needed to assess if poorer QoL is associated with poor gluten-free diet adherence and thereby increased disease activity. Additionally, the association between QoL and disease activity did not persist with the parent-proxy PedQL except in the school sub score. This finding creates an area of intervention for providers to spark discussion and help parents in understanding their adolescents’ QoL.