Highlights
- •The prevalence of celiac disease is increasing.
- •The M-CD-DUX was the first reliable and adapted instrument in an Arab country for the evaluation of QoL in children and adolescents celiac.
- •The total scores showed a worse QoL. This QoL was reduced especially in items and subscales, which are related to gluten-free products.
- •The gluten-free diet is the only effective treatment for celiac disease.
- •Improving their QoL requires taking into account many factors, including those related to gluten-free products, strict adherence to GFD, as well as a good integration into society.
Abstract
Purpose
Gluten-free diet (GFD) is a lonely lifelong management for patients with celiac disease
(CD), which may affect their quality of life (QoL). This can be evaluated by generic
or specific instruments. We aimed to translate, validate and cross-culturally adapt
a specific-CD instrument to Moroccan-Arabic version (M-CD-DUX), and then apply it
to evaluate the QoL of Moroccan celiac children.
Design and methods
CD-DUX instrument was translated and culturally adapted, and preliminarily evaluated
on 15 children and their proxies. The reproducibility and internal consistency of
M-CD-DUX were measured by intra-class coefficient (ICC) and Cronbach α tests respectively.
The statistical analysis of data consisted was conducted using SPSS, and the Goodness-of-Fit
test was measured by SPSS AMOS.
Results
The reliability of M-CD-DUX instrument showed a good internal consistency and reproducibility.
The psychometric properties of M-CD-DUX were acceptable, and the instrument's Model
fit was good [(Root Mean Square Error of Approximation = 0.062; χ2 = 603.08, p < 0.001].
M-CD-DUX was completed by 52 celiac children and their proxies. It showed a worse
QoL for all items and subscales, and no difference was observed between the QoL of
celiac children already under GFD and those recently diagnosed.
Conclusion
M-CD-DUX was the first reliable and adapted instrument used to evaluate the QoL of
celiac children in an Arab country, emphasizing a negative impact of CD on their QoL.
Practice implications
Therefore, improving their QoL requires to make gluten-free products available to
them at an appropriate price as well as a good integration into society.
Keywords
Abbreviation:
CD (Celiac Disease), CD-Q (CD-Questionnaire), GFD (Gluten-Free Diet), ICC (coefficient of Intra-Class Correlation), M-CD-DUX (Moroccan version of CD-Dux Questionnaire), QoL (Quality of Life), QoLHR (Quality of Life Health Retaled)To read this article in full you will need to make a payment
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References
- Measuring quality of life in parents or caregivers of children and adolescents with celiac disease: Development and content validation of the questionnaire.Nutrients. 2019; 11: 2302
- Diagnostic immunologique de la maladie cœliaque chez l’enfant. Mise au point.Immuno-Anal Biol Spéc. 2009; 24: 217-222
- Validation of the Turkish version of the celiac disease questionnaire (CDQ).Health and Quality of Life Outcomes. 2015; 13: 1-7
- Food aid for celiacs with low economic resources.(available at:) (accessed January 2019)
- Reimbursement of gluten-free diet products.(available at:) (accessed January 2019)
- Validation d’un questionnaire de qualité de vie.in: Qualitéde vie et dermatologie. John Libbey Eurotext, Montrouge2001: 13
- Health-related quality of life in Spanish children with coeliac disease.Journal of Pediatric Gastroenterology and Nutrition. 2016; 62: 603-608
- Translating health status questionnaires and evaluating their quality.Journal of Clinical Epidemiology. 1998; 51: 913-923
- Celiac disease: The endocrine connection.Journal of Pediatric Nursing. 2010; 25: 311-313
- Transcultural adaptation and validation of the celiac disease quality of life (CD-QOL) survey, a specific questionnaire to measure quality of life in patients with celiac disease.Revista Española de Enfermedades Digestivas. 2013; 105: 585-593
- Policies around the world.(available at:)https://celiac.org/gluten-free-living/global-associations-and-policies/policies-around-the-world/(accessed January 2019)Date: 2018
- Get financial support.(available at:) (accessed January 2019)
- Quality of life in coeliac disease: Item reduction, scale development and psychometric evaluation of the coeliac disease assessment questionnaire (CDAQ).Alimentary Pharmacology & Therapeutics. 2018; 48: 852-862
- Publication 502- medical and dental expenses.(available at:)https://www.irs.gov/pub/irs-pdf/p502.pdf(accessed January 2019)Date: 2019
- The development and validation of a new coeliac disease quality of life survey (CD-QOL).Alimentary Pharmacology & Therapeutics. 2010; 31: 666-675
- La maladie cœliaque du nourrisson et de l’enfant au CHU de Marrakech.Journal Pédiatrie Puériculture. 2016; 29: 289-294
- Parent experiences raising young people with type 1 diabetes and celiac disease.Journal of Pediatric Nursing. 2015; 30: 353-363
- Proposition d’une échelle de mesure contextualisée de l’apprentissage d’équipe : Une analyse exploratoire, Cahier n°321, Université Paris IX Dauphine.Centre de recherche DMSP, 2003
- Methods for validating and norming translations of health status questionnaires.Journal of Clinical Epidemiology. 1998; 51: 953-959
- Development of the WHOQOL: Rationale and current status.International Journal of Mental Health. 1994; 23: 24-56
- Nutritional quality of gluten-free products in Moroccan supermarkets and e-commerce platforms.Cereal Chemistry. 2020; 97: 912-920
- Availability and cost of gluten-free products in Moroccan supermarkets and e-commerce platforms.British Food Journal. 2020; (in press)https://doi.org/10.1108/bfj-06-2019-0411
- Assessment of quality of life in children, adolescents, and adults with celiac disease through specific questionnaires: Review.Nutr Clin Métabolisme. 2020; 34: 194-200https://doi.org/10.1016/j.nupar.2020.03.006
- Diagnosing coeliac disease and the potential for serological markers.Nature Reviews. Gastroenterology & Hepatology. 2014; 11: 655-663
- Development and validation of the celiac disease questionnaire (CDQ), a disease-specific health-related quality of life measure for adult patients with celiac disease.Journal of Clinical Gastroenterology. 2007; 41: 157-166
- Development and validation of a celiac disease quality of life instrument for North American children.Journal of Pediatric Gastroenterology and Nutrition. 2013; 57: 477-486
- The duc-25: A short-form questionnaire for measuring health related quality of life of children with a chronic illness.Quality of Life Research. 1998; 7: 619
- Translation, cultural adaptation, and validation of the celiac disease DUX (CDDUX).Jornal de Pediatria. 2015; 91: 448-454
- Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease-specific questionnaire.Acta Paediatrica. 2007; 91: 348-354
- Authors of the BSG coeliac disease guidelines development group. Diagnosis and management of adult coeliac disease: Guidelines from the British Society of Gastroenterology.Gut. 2014; 63: 1210-1228
- Quality of life in coeliac patients: Italian validation of a coeliac questionnaire.European Journal of Internal Medicine. 2013; 24: 87-91
- Psychometric theory McGraw-Hill New York. The role of university in the development of entrepreneurial vocations: A Spanish study.1978
- Histopathology of celiac disease.Biomedicine & Pharmacotherapy. 2000; 54: 368-372
- Cross-cultural validation of quality of life measures.in: Quality of life assessment: International perspectives. Springer, Berlin, Heidelberg1994: 19-32
- Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: A European perspective.Quality of Life Research. 2005; 14: 1065-1077
- Calidad de vida en niños y adolescentes con enfermedad celíaca: Versión argentina del cuestionario específico CDDUX.Acta Gastroenterologica Latinoamericana. 2012; 42: 12-19
- The European KIDSCREEN approach to measure quality of life and well-being in children: Development, current application, and future advances.Quality of Life Research. 2014; 23: 791-803
- Evaluating the fit of structural equation models: Tests of significance and descriptive goodnessof-fit measures.International Journal of Methods in Psychiatric Research. 2003; 8: 23-74
- You Can’t eat WHAT? managing the stigma of celiac disease.Deviant Behavior. 2014; 35: 456-474
- Global prevalence of celiac disease: Systematic review and meta-analysis.Clinical Gastroenterology and Hepatology. 2018; 16 (e2): 823-836
- A comprehensive questionnaire for the assessment of health-related quality of life in coeliac disease (CDQL).Quality of Life Research. 2017; 26: 2831-2850
- Health-related quality of life in children and adolescents with celiac disease : Patient-driven data from focus group interviews.Quality of Life Research. 2014; 23: 1883-1894
- CDDUX: A disease-specific health-related quality-of-life questionnaire for children with celiac disease.Journal of Pediatric Gastroenterology and Nutrition. 2008; 47: 147-152
- The PedsQLTM* 4.0 as a pediatric population health measure: Feasibility, reliability, and validity.Ambulatory Pediatrics. 2003; 3: 329-341
- Quality of life in adolescents with treated coeliac disease: Influence of compliance and age at diagnosis.Journal of Pediatric Gastroenterology and Nutrition. 2008; 47: 555-561
- The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection.Medical Care. 1992; 30: 473-4831593914
- Hypervigilance to a gluten-free diet and decreased quality of life in teenagers and adults with celiac disease.Digestive Diseases and Sciences. 2018; 63: 1438-1448
- Factors affecting consumers' adherence to gluten-free diet, a systematic review.Trends in Food Science & Technology. 2019; 85: 23-33
- Quality of life measurement in gastroenterology: What is available?.The American Journal of Gastroenterology. 2001; 96: 285-297
Article info
Publication history
Published online: July 05, 2021
Accepted:
June 16,
2021
Received in revised form:
June 15,
2021
Received:
March 19,
2021
Identification
Copyright
© 2021 Elsevier Inc. All rights reserved.
