Long-term health and treatment outcomes in adult coeliac disease patients diagnosed by screening in childhood

Abstract

Background: The diagnostic yield of coeliac disease could be improved by screening in at-risk groups, but long-term benefits of this approach are obscure.

Objective: To investigate health, quality of life and dietary adherence in adult coeliac patients diagnosed in childhood by screening.

Methods: After thorough evaluation of medical history, follow-up questionnaires were sent to 559 adults with a childhood coeliac disease diagnosis. The results were compared between screen-detected and clinically-detected patients, and also between originally asymptomatic and symptomatic screen-detected patients.

Results: In total, 236 (42%) patients completed the questionnaires a median of 18.5 years after childhood diagnosis. Screen-detected patients (n = 48) had coeliac disease in the family and type 1 diabetes more often, and were less often smokers and members of coeliac societies compared to clinically-detected patients, whereas the groups did not differ in current self-experienced health or health concerns, quality of life or dietary adherence. Screen-detected, originally asymptomatic patients had more anxiety than those presenting with symptoms, whereas the subgroups were comparable in other current characteristics.

Conclusion: Comparable long-term outcomes between screen-detected and clinically-detected patients support risk-group screening for coeliac disease. However, asymptomatic patients may require special attention.

Keywords: Children; diagnosis; gluten-free diet; long-term follow-up; quality of life; screening.

Figure 1.

Flowchart of the study. ^aPatients were gathered from our research database and supplemented by a search in the patient records with ICD-7-10 diagnosis codes K90.0, 579A, 579.0, 269.00, 269.98 and 286.00 possibly indicating coeliac disease. ^bPatients with an incorrect diagnosis code were found to have, for example, haemophilia A, cow’s milk allergy, primary lactose intolerance or von Willerbrandt disease.

Figure 2.

Psychological General Well-Being and Gastrointestinal Symptom Rating Scale subscores in adults. Coeliac disease patients were first divided into those diagnosed in childhood via risk-group screening (n = 48) and due to clinical suspicion (n = 188) ((a) and (b)), and the group of screen-detected patients was then further divided into those who were asymptomatic (n = 27) and symptomatic (n = 21) at diagnosis (c). The corresponding values for 110 non-coeliac adults are shown for comparison. Higher scores indicate either better psychological well-being ((a) and (c)) or more severe symptoms (b). Differences between the groups were evaluated by Kruskal–Wallis test and Bonferroni correction was used in pair-wise post hoc comparisons. Median (horizontal line), interquartile range (box), and minimum and maximum values (vertical line) of the scores are presented for each patient group. PGWB: Psychological General Well-Being; GSRS: Gastrointestinal Symptom Rating Scale.