Abstract:
BACKGROUND:The treatment of celiac disease is a strict, life-long gluten-free (GF) diet. This diet is complex and can be challenging. Factors affecting adherence to the GF diet are important to identify for improving adherence. OBJECTIVE:To identify factors that inhibit or improve adherence to a GF diet in children with celiac disease. METHODS:Patients (<18 years of age) with biopsy-confirmed celiac disease followed by the gastroenterology service at a tertiary care paediatric institution were surveyed using a mailed questionnaire. Factors influencing adherence to a GF diet were scored from 1 to 10 based on how often they were problematic (1 = never, 10 = always). Parents of patients <13 years of age were instructed to complete the survey with their child. Adolescents ≥13 years of age were asked to complete the survey themselves. RESULTS:Of 253 subjects, 126 completed the survey; the median age was 12 years (range two to 18 years). Forty percent were adolescents. Overall, participants reported good adherence at home and school, but lower adherence at social events. Adolescents reported lower adherence compared with parents. Availability of GF foods and cost were the most significant barriers. Other factors identified to help with a GF diet included education for schools/restaurants and improved government support. CONCLUSIONS:Availability, cost and product labelling are major barriers to adherence to a GF diet. Better awareness, improved labelling and income support are needed to help patients. HISTORIQUE:Le traitement de la maladie cœliaque consiste à suivre un régime sans gluten (RSG) rigoureux jusqu’à la fin de ses jours. Ce régime est complexe et peut-être difficile à respecter. Il est important de déterminer les facteurs influant sur l’adhérence au RSG pour améliorer cette adhérence. OBJECTIF:Déterminer les facteurs qui inhibent ou améliorent l’adhérence au RSG chez les enfants atteints de la maladie cœliaque. MÉTHODOLOGIE:À l’aide d’un questionnaire envoyé par la poste, les chercheurs ont sondé les patients (de moins de 18 ans) atteints d’une maladie cœliaque confirmée par biopsie et suivis au service de gastroentérologie d’un établissement pédiatrique de soins tertiaires. Les facteurs influant sur l’adhérence à un RSG ont été classés de un à dix selon la fréquence à laquelle ils causaient problème (1 = jamais, 10 = toujours). Les parents des patients de moins de 13 ans étaient invités à remplir le questionnaire avec l’enfant. Ceux de 13 ans et plus étaient invités à le remplir seuls. RÉSULTATS:Sur 253 sujets, 126 ont rempli le sondage. Ils avaient 12 ans d’âge médian (plage de deux à 18 ans). Quarante pour cent étaient des adolescents. Dans l’ensemble, les participants signalaient une bonne adhérence à la maison et à l’école, mais une adhérence plus faible lors d’événements sociaux. Les adolescents déclaraient une adhérence plus faible que les parents. L’offre d’aliments sans gluten et le coût étaient les principaux obstacles. D’autres facteurs ont été signalés pour faciliter un RSG, y compris l’éducation dans les écoles et les restaurants et un meilleur soutien gouvernemental. CONCLUSIONS:L’offre, le coût et l’étiquetage des produits sont d’importants obstacles à l’adhérence à un RSG. Une meilleure sensibilisation, un meilleur étiquetage et le soutien du revenu s’imposent pour aider les patients.
journal_name
Paediatr Child Healthjournal_title
Paediatrics & child healthauthors
MacCulloch K,Rashid Mdoi
10.1093/pch/19.6.305subject
Has Abstractpub_date
2014-06-01 00:00:00pages
305-9issue
6eissn
1205-7088issn
1918-1485journal_volume
19pub_type
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