Rate, Risk Factors, and Outcomes of Nonadherence in Pediatric Patients With Celiac Disease: A Systematic Review

Myléus, Anna; Reilly, Norelle R.; Green, Peter H.R.

doi:10.1016/j.cgh.2019.05.046

Cited by 68 publications

(77 citation statements)

References 61 publications

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“…In comparison to other topics regarding CD, little literature can be found regarding this subject, especially in pediatric populations. Our first literature search was unable to identify any systematic work on this matter and the first review published on the topic was on June 4, 2019 by Myléus et al 19 In this work, Myléus et al 19 reviews the methods used to evaluate GFD compliance and associated risk factors while we propose to identify specific factors that positively or negatively affect GFD compliance.…”

Section: Discussionmentioning

confidence: 99%

Factors Affecting Compliance to a Gluten-Free Diet in Pediatric Populations with Celiac Disease

Macedo-Campos

Pinto-Ribeiro

et al. 2021

Journal of Child Science

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Celiac disease (CD) is a multisystemic autoimmune disorder triggered by gluten, and the only known remedy available for this malady is a gluten-free diet (GFD). Therefore, we performed a systematic review to correlate the influence of different factors in compliance to a GFD. We searched PubMed database, from inception to April 2019. As inclusion criteria we considered population under 18 years, confirmed diagnosis of CD without related comorbidities and the study objective being the factors affecting compliance to a GFD. The variables compared were age, parent's education level, parental knowledge about CD, family type, celiac association membership, quality of life, and perception of difficulties in maintaining a GFD. We identified 1,414 articles, 35 articles were eligible for full text assessment and 12 were included in the study since they studied similar variables. Our work has found some limitations namely a variety of methods to assess GFD compliance, a limiting definition of compliance, a parental bias in data, an absence of standardization in age categories, and a majority of studies being observational in their nature. Age as well as parental knowledge of CD and family type are key factors in pediatric GFD compliance. Nevertheless environmental, social, and family factors were also related with compliance. Further studies are needed to fully disclose the causality relation between these factors and compliance.

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Section: Discussionmentioning

confidence: 99%

Factors Affecting Compliance to a Gluten-Free Diet in Pediatric Populations with Celiac Disease

Macedo-Campos

Pinto-Ribeiro

et al. 2021

Journal of Child Science

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“…Additionally, 1.3% of the children with coeliac disease were assumed to have IgA deficiency [3,43]. (3) (a) Compliance to a gluten-free diet of 96%, which is in accordance with surveys in patient organisations [6,46], and (b) compliance to a gluten-free diet of 78%, which is the median adherence rate in a recent systematic review [47].…”

Section: Sensitivity Analysismentioning

confidence: 89%

Is mass screening for coeliac disease a wise use of resources? A health economic evaluation

et al. 2021

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Background Living with undiagnosed symptomatic coeliac disease is connected with deteriorated health, and persons with coeliac disease often wait a long time for their diagnosis. A mass screening would lower the delay, but its cost-effectiveness is still unclear. Our aim was to determine the cost-effectiveness of a coeliac disease mass screening at 12 years of age, taking a life course perspective on future benefits and drawbacks. Methods The cost-effectiveness was derived as cost per quality-adjusted life-year (QALY) using a Markov model. As a basis for our assumptions, we mainly used information from the Exploring the Iceberg of Celiacs in Sweden (ETICS) study, a school-based screening conducted in 2005/2006 and 2009/2010, where 13,279 12-year-old children participated and 240 were diagnosed with coeliac disease, and a study involving members of the Swedish Coeliac Association with 1031 adult participants. Results The cost for coeliac disease screening was 40,105 Euro per gained QALY. Sensitivity analyses support screening based on high compliance to a gluten-free diet, rapid progression from symptom-free coeliac disease to coeliac disease with symptoms, long delay from celiac disease with symptoms to diagnosis, and a low QALY score for undiagnosed coeliac disease cases. Conclusions A coeliac disease mass screening is cost-effective based on the commonly used threshold of 50,000 Euro per gained QALY. However, this is based on many assumptions, especially regarding the natural history of coeliac disease and the effects on long-term health for individuals with coeliac disease still eating gluten.

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“…More recently, compliance with a GFD has been reported to be in the range of approximately 45 to 90% [ 20 ]. In the case of children, a systematic review of 49 studies, published up to 2018, revealed adherence rates ranging from 23 to 98% ( Table 1 ) [ 90 ]. The broad variability in adherence rates reported in the literature may be explained by the different populations examined (e.g., adults, adolescents, children, ethnic minorities), but also by the different methods used for determining adherence, the quality of investigations, and the definition of adherence (e.g., strict, high, partial, fair, poor adherent, or non-adherent).…”

Section: Adherence To a Gfdmentioning

confidence: 99%

“…Therefore, the rate of inadvertent non-adherence, caused by, for example, contaminated naturally gluten-free products or hidden vital gluten, is likely to be highly underestimated and this fact should be particularly considered in the judgement of reported GFD adherence rates. A cross-sectional survey on intentional and inadvertent non-adherence was conducted using a self-completion questionnaire received from 287 adult patients with CD from the North East of England [ 90 ]. Intentional gluten consumption was common (40%), but not as frequent as inadvertent lapses.…”

Section: Adherence To a Gfdmentioning

confidence: 99%

Challenges of Monitoring the Gluten-Free Diet Adherence in the Management and Follow-Up of Patients with Celiac Disease

et al. 2021

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Celiac disease (CD) is a chronic gluten-responsive immune mediated enteropathy and is treated with a gluten-free diet (GFD). However, a strict diet for life is not easy due to the ubiquitous nature of gluten. This review aims at examining available evidence on the degree of adherence to a GFD, the methods to assess it, and the barriers to its implementation. The methods for monitoring the adherence to a GFD are comprised of a dietary questionnaire, celiac serology, or clinical symptoms; however, none of these methods generate either a direct or an accurate measure of dietary adherence. A promising advancement is the development of tests that measure gluten immunogenic peptides in stools and urine. Causes of adherence/non-adherence to a GFD are numerous and multifactorial. Inadvertent dietary non-adherence is more frequent than intentional non-adherence. Cross-contamination of gluten-free products with gluten is a major cause of inadvertent non-adherence, while the limited availability, high costs, and poor quality of certified gluten-free products are responsible for intentionally breaking a GFD. Therefore, several studies in the last decade have indicated that many patients with CD who follow a GFD still have difficulty controlling their diet and, therefore, regularly consume enough gluten to trigger symptoms and damage the small intestine.

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Rate, Risk Factors, and Outcomes of Nonadherence in Pediatric Patients With Celiac Disease: A Systematic Review

Cited by 68 publications

References 61 publications

Factors Affecting Compliance to a Gluten-Free Diet in Pediatric Populations with Celiac Disease

Factors Affecting Compliance to a Gluten-Free Diet in Pediatric Populations with Celiac Disease

Is mass screening for coeliac disease a wise use of resources? A health economic evaluation

Challenges of Monitoring the Gluten-Free Diet Adherence in the Management and Follow-Up of Patients with Celiac Disease

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