J Pediatr Gastroenterol Nutr. 2023 Nov 1;77(5):640-647. doi: 10.1097/MPG.0000000000003911.Epub 2023 Aug 15.

Maria Ulnes ^1 2, Henrik Albrektsson ³, Ketil Størdal ^4 5, Robert Saalman ^1 2, Jonas F Ludvigsson ^6 7 8, Karl Mårild ^1 2

Author information

¹From the Department of Pediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, Gothenburg, Sweden.

²the Department of Pediatrics, Queen Silvia Children's Hospital, Gothenburg, Sweden.

³Statistiska konsultgruppen, Gothenburg, Sweden.

⁴the Department of Pediatric Research, University of Oslo, Oslo, Norway.

⁵Oslo University Hospital, Oslo, Norway.

⁶the Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden.

⁷the Department of Pediatrics, Örebro University Hospital, Örebro, Sweden.

⁸the Department of Medicine, Columbia University College of Physicians and Surgeons, New York, NY.

Abstract

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.