Lack of Follow-Up for Celiac Disease During Childhood Not Associated With Poor Health Outcomes: A Regional Swedish Cohort Study

OBJECTIVES: The objective of the study is to examine the association between the lack of follow-up for celiac disease (CD) during childhood and dietary adherence, disease remission, and health-related quality of life (HRQoL). METHODS: We invited 243 randomly selected children diagnosed with CD in 2013–2018 in Gothenburg, Sweden, and 162 consented to participate (67%). We retrieved information on clinical follow-up and current wellbeing using medical and laboratory records data, as well as validated questionnaires on symptoms of CD, dietary adherence, and HRQoL. We analyzed tissue-transglutaminase antibodies (tTGA) as a measure of disease remission. We defined lack of follow-up as no CD-related physician/dietician-led visit or measurement of tTGA over the past 24 months of study enrollment. RESULTS: The mean age at study enrolment was 12.7 (range 7.8–18.2) years. Out of 162 children with an average disease duration of 5.3 (range 2.3–8.8) years, 23 (14%) lacked follow-up. tTGA had normalized in 94% [95% confidence interval (CI) = 71%–100%] of children without follow-up versus 91% (95% CI: 85%–95%) of children with continued follow-up. Of children without follow-up, 65% (95% CI: 38%–86%) reported a dietary adherence score indicating very good adherence, versus 72% (95% CI: 63%–80%) of those with continued follow-up. Also, lack of follow-up was not significantly associated with growth, symptom scores, or HRQoL. CONCLUSIONS: In this regional cohort study of mostly older children and adolescents, lack of follow-up for CD was not significantly linked to dietary adherence, disease remission, or HRQoL. How these results hold in larger, unselected samples with longer follow-up, including transition to adult care, warrants further study.