Rate, Risk Factors, and Outcomes of Nonadherence in Pediatric Patients With Celiac Disease: A Systematic Review
Abstract
Background and aims The only treatment for celiac disease is strict adherence to a gluten-free diet (GFD). We performed a systematic review to investigate the rate of adherence to a GFD in children with celiac disease, risk factors that affect adherence, and outcomes of non-adherence. Methods We searched PubMed, Cochrane Library, EBSCO, and Scopus for studies through January 2019. We included observational studies of ≥50 children diagnosed with celiac disease and recommended for placement on a GFD. We collected data on adherence assessment (self-report, serology tests, structured dietary interview, biopsies, or assays for gluten immunogenic peptides), risk factors, and outcomes related to adherence. Findings were presented with medians, range, and a narrative synthesis. Results We identified 703 studies; of these, 167 were eligible for full-text assessment and 49 were included in the final analysis, comprising 7850 children. Rates of adherence to a GFD ranged from 23% to 98%. Comparable rates (median rates of adherence, 75%-87%) were found irrespective of how assessments were performed. Adolescents were at risk of non-adherence and children whose parents had good knowledge about celiac disease adhered more strictly. Non-adherence associated with patient growth, symptoms, and quality of life. Conclusion In a systematic review of 49 studies of children with celiac disease, we found substantial variation in adherence to a GFD among patients. Rate of adherence was not associated…
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Adherence to a gluten-free diet in children with coeliac disease may vary between 45% and 90%.
“reinforcing at each visit the importance of dietary compliance which may vary between 45-90% (6-9).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [9]
Compared with other methods to evaluate adherence, GIP testing disclosed the lowest adherence rate to the gluten-free diet (75%).
“Compared with other methods to evaluate adherence, GIP testing disclosed the lowest adherence rate to the GFD (75%), suggesting that this assay is more sensitive than others to detect cases occasionally exposed to inadvertent gluten ingestion (9).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [9]
GIP testing is more sensitive than other methods to detect cases occasionally exposed to inadvertent gluten ingestion.
“suggesting that this assay is more sensitive than others to detect cases occasionally exposed to inadvertent gluten ingestion (9).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [9]
A recent systematic review including 7850 children from 49 studies published up to 2019 showed a median adherence rate to the gluten-free diet of 78% (range 23% to 98%) in paediatric patients.
“A recent systematic review including 7850 children from 49 studies published up to 2019, showed a median adherence rate to GFD of 78% (23% to 98%) in paediatric patients (132)”
Age and age at diagnosis have been observed as an important factor for adherence to the gluten-free diet.
“Age and age at diagnosis have been observed as an important factor for adherence.”
Difficulties in investigating adherence to the gluten-free diet include the definition of strict adherence and the different methods to assess adherence, which are most frequently subjective.
“Some of the difficulties when investigating adherence to the GFD include, the definition of 'strict adherence' and the different methods to assess adherence to GFD, which are most frequently subjective (132).”
Adherence rates to the gluten-free diet were similar regardless of the method used: 87% for biopsies, 81% by self-reports, 77% for structured dietary reports, 76% for serology tests, and 75% for GIP.
“Adherence rates were similar regardless of the method used: 87% for biopsies, 81% by self-reports, 77% for structured dietary reports, 76% for serology tests and 75% for GIP.”
Adherence rate to the gluten-free diet varied with geographical area: Scandinavia 90%, Europe excluding Scandinavia 74%, and North America 79%.
“which varied with geographical area: Scandinavia 90%, Europe (excluding Scandinavia) 74% and North America 79%.”
There is no clear association between adherence to the gluten-free diet and factors such as gender, the presence of comorbidities other than anxiety and depression, the presence of coeliac disease-related symptoms at diagnosis, the presence of extradigestive symptomatology, family history of coeliac disease, or socioeconomic status.
“There is no clear association between adherence to the GFD and factors such as gender (132,137,141), the presence of comorbidities other than anxiety and depression (132,141), the presence of CD-related symptoms at diagnosis, the presence of extradigestive symptomatology, family history of CD or socioeconomic status (132).”
Several factors that have been identified to influence adherence, either personal or situational factors, are summarized in Figure 6.
“Several factors that have been identified to influence adherence, either personal or situational factors (environmental barriers that hinder adherence and resources that promote it), are summarized in Figure 6 (47,132,137,141,143,152-164).”
Adolescence is considered to be a critical period where adherence to the gluten-free diet is frequently poorer than in younger children.
“Specifically, adolescence is considered to be a critical period were adherence is frequently poorer than in younger children, although some authors did not find such association (132).”
Some authors did not find an association between adolescence and poorer adherence to the gluten-free diet.
“although some authors did not find such association (132).”
Systematic dietary interviews are time-consuming and have shown large variability.
“It is timeconsuming and has shown large variability (132), although efforts have been made to standardize the methodology (133).”
Adherence to the gluten-free diet can be assessed by systematic dietary interviews by a trained dietitian.
“Adherence to the GFD can be assessed by systematic dietary interviews by a trained dietitian.”
Cites
Lebwohl, B., Sanders, D. S., & Green, P. H. R. (2018) · The Lancet · doi:10.1016/s0140-6736(17)31796-8 · Cited by 1,065 · see citing works
Self-citationFactors Associated with Dietary Adherence in Celiac Disease: A Nationwide Study
Kurppa, K., Lauronen, O., Collin, P., Ukkola, A., Laurila, K., Huhtala, H., Mäki, M., & Kaukinen, K. (2012) · Digestion · doi:10.1159/000341416 · Cited by 139 · see citing works
Celiac Disease Symptom Resolution: Effectiveness of the Gluten‐free Diet
Sansotta, N., Amirikian, K., Guandalini, S., & Jericho, H. (2018) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0000000000001634 · Cited by 109 · see citing works
Olsson, C., Hörnell, A., Ivarsson, A., & Sydner, Y. M. (2008) · Journal of Human Nutrition and Dietetics · doi:10.1111/j.1365-277x.2008.00867.x · Cited by 101 · see citing works
Altobelli, E., Paduano, R., Gentile, T., Caloisi, C., Marziliano, C., Necozione, S., & di Orio, F. (2013) · Health and Quality of Life Outcomes · doi:10.1186/1477-7525-11-204 · Cited by 63 · see citing works
Gerasimidis, K., Zafeiropoulou, K., Mackinder, M., Ijaz, U. Z., Duncan, H., Buchanan, E., Cardigan, T., Edwards, C. A., McGrogan, P., & Russell, R. K. (2018) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0000000000002062 · Cited by 60 · see citing works
Mager, D. R., Marcon, M., Brill, H., Liu, A., Radmanovich, K., Mileski, H., Nasser, R., Alzaben, A., Carroll, M. W., Yap, J., et al. (2018) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0000000000001873 · Cited by 56 · see citing works
Charalampopoulos, D., Panayiotou, J., Chouliaras, G., Zellos, A., Kyritsi, E., & Roma, E. (2013) · European Journal of Clinical Nutrition · doi:10.1038/ejcn.2013.54 · Cited by 52 · see citing works
Myléus, A., Petersen, S., Carlsson, A., Hammarroth, S., Högberg, L., & Ivarsson, A. (2014) · BMC Public Health · doi:10.1186/1471-2458-14-425 · Cited by 37 · see citing works
Self-citationEffect of gluten-free diet on the growth and nutritional status of children with coeliac disease
Radlovic, N., Mladenovic, M., Lekovic, Z., Zivanovic, D., Brdar, R., Radlovic, V., Ristic, D., Pavlovic, M., Stojsic, Z., Vuletic, B., et al. (2009) · Srpski arhiv za celokupno lekarstvo · doi:10.2298/sarh0912632r · Cited by 36 · see citing works
Antitissue Transglutaminase Normalization Postdiagnosis in Children With Celiac Disease
Isaac, D. M., Rajani, S., Yaskina, M., Huynh, H. Q., & Turner, J. M. (2017) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0000000000001480 · Cited by 33 · see citing works
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ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease.
Mearin, M. L., Agardh, D., Antunes, H., Al‐toma, A., Auricchio, R., Castillejo, G., Catassi, C., Ciacci, C., Discepolo, V., Dolinsek, J., et al. (2022) · Journal of pediatric gastroenterology and nutrition · doi:10.1097/mpg.0000000000003540 · Cited by 186 · see citing works
Luque, V., Crespo‐Escobar, P., Hård af Segerstad, E. M., Koltai, T., Norsa, L., Roman, E., Vreugdenhil, A., Fueyo‐Díaz, R., & Ribes‐Koninckx, C. (2024) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1002/jpn3.12079 · Cited by 32 · see citing works
- Authors
- Myléus, A., Reilly, N. R., & Green, P. H. R.
- Affiliations
- Umeå University (SE)
- Columbia University Irving Medical Center (US)
- Corresponding author
- Myléus, Anna
- Venue
- Clinical Gastroenterology and Hepatology
- Publisher
- Elsevier BV
- Published
- 2020-03
- Volume
- 18
- Issue
- 3
- Pages
- 562-573
- ISSN
- 1542-3565 (ISSN-L)
- OpenAlex
- W2948109422
- Cited by
- 105
- References
- 11
- Citations by year
- 2026: 13 · 2025: 15 · 2024: 16 · 2023: 17 · 2022: 18 · 2021: 18 · 2020: 6 · 2019: 1 · 2017: 1
- FWCI
- 1.95
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Clinical Gastroenterology and Hepatology (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Forskningsrådet om Hälsa, Arbetsliv och Välfärd (2006-1512)
- Topics
- Health Sciences › Medicine › Gastroenterology › Celiac Disease Research and Management
- Health Sciences › Medicine › Family Practice › Medication Adherence and Compliance
- Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
- Keywords
- celiac disease, gluten-free diet, dietary adherence, non-compliance, pediatric patients, adolescents, risk factors, adherence measurement methods, parental knowledge, quality of life, growth, clinical symptoms
- MeSH terms
- Adolescent, Celiac Disease, Child, Humans, Patient Compliance, Quality of Life, Risk Factors, Diet, Gluten-Free
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