Health‐related quality of life in Spanish children with coeliac disease
Abstract
Objectives The aim of the study was to assess health-related quality of life (HRQOL) using the Coeliac Disease Dutch Questionnaire (CDDUX) in Spanish children with coeliac disease. Methods The CDDUX was cross-culturally adapted according to international consensus guidelines. HRQOL was assessed in coeliac members of the Madrid Coeliac Association ages 8 to 18 years using the adapted CDDUX. Cronbach α coefficient was determined as a measure of intraquestionnaire reliability and intraclass correlation coefficients as a measure of reliability between scores awarded by children and parents. Demographic and clinical variables associated with HRQOL were also assessed. Results A total of 1602 children of 3122 registered Madrid Coeliac Association members ages 8 to 18 years were invited to participate. The questionnaire was completed by 480 families (30%): 214 only by parents, 214 by parents and their children, and 52 only by children. Cronbach α coefficient for the total score for parents was 0.90, and for children 0.88 (0.75-0.90 by scales). Mean total (standard deviation [SD]) HRQOL scores in children and parents were 55.5 (SD 12.7) and 53.89 (SD 12.19), respectively, with no differences detected in paired comparisons between the 2 groups. Significantly worse HRQOL scores were recorded in children showing a nonclassical clinical presentation, in those not adhering to treatment and in those reporting difficulties in following the diet. Conclusions The CDDUX questionnaire emerged as…
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Nine studies found similar health-related quality of life in children with celiac disease as in control children.
“Nine of these studies found similar HRQOL in children with CD as in control children (4, 82, 95, 96, 99, 100, 102, 103, 106).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [96]
Five of six studies using celiac disease-specific health-related quality of life questionnaires found that the health-related quality of life of children and adolescents with celiac disease was poor or neutral.
“However, five of the six studies using CD-specific HRQOL questionnaires (CDDUX, CDQL, CDQOL Scale-KINDL, CDPQOL) found that the HRQOL of children and adolescents with CD was poor or neutral (82, 96, 100, 105, 109).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [96]
Parents gave lower health-related quality of life scores compared to their children.
“Parents gave lower HRQOL scores as compared to their children (96, 97).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [96]
Cites
Psychometric considerations in evaluating health-related quality of life measures
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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
Nordyke, K., Norström, F., Lindholm, L., Stenlund, H., Rosén, A., & Ivarsson, A. (2013) · BMC Public Health · doi:10.1186/1471-2458-13-142 · Cited by 57 · 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
Self-citationMeyer, S., & Rosenblum, S. (2018) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0000000000001635 · Cited by 19 · see citing works
Comparison of Patients’ and Doctors’ Reports on Health‐related Quality of Life in Celiac Disease
Vriezinga, S. L., Farih, N., van der Meulen‐de Jong, A. E., Putter, H., Rings, E. H. H. M., Schaart, M. W., Schweizer, J. J., Wessels, M. M. S., & Mearin, M. L. (2017) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0000000000001355 · Cited by 17 · see citing works
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- Authors
- Barrio, J., Román, E., Cilleruelo, M., Márquez, M., Mearin, M., & Fernández, C.
- Affiliations
- Departaments of Pediatrics Hospital Universitario de Fuenlabrada Madrid Spain
- Hospital Universitario Puerta de Hierro Majadahonda (ES)
- Departaments of Pediatrics Hospital Universitario Puerta Hierro Madrid Spain
- Asociación de Celíacos de Madrid Madrid Spain
- Leiden University Medical Center (NL)
- Epidemiology Hospital Universitario Clínico Madrid Spain
- Venue
- Journal of Pediatric Gastroenterology and Nutrition
- Publisher
- Wiley
- Published
- 2016-04
- Volume
- 62
- Issue
- 4
- Pages
- 603-608
- ISSN
- 0277-2116 (ISSN-L)
- 1536-4801
- OpenAlex
- W2321120117
- Cited by
- 41
- References
- 3
- Citations by year
- 2026: 1 · 2025: 2 · 2024: 3 · 2023: 2 · 2022: 3 · 2021: 6 · 2020: 9 · 2019: 7 · 2018: 3 · 2017: 4 · 2016: 1
- FWCI
- 2.77
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Pediatric Gastroenterology and Nutrition (publishedVersion)
- PubMed (publishedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion)
- Leiden Repository (Leiden University) (submittedVersion)
- Topics
- Health Sciences › Medicine › Gastroenterology › Celiac Disease Research and Management
- Health Sciences › Medicine › Surgery › Eosinophilic Esophagitis
- Health Sciences › Medicine › Gastroenterology › Gastrointestinal motility and disorders
- Keywords
- celiac disease, health-related quality of life, cross-cultural adaptation, children, parent-child agreement, medication adherence, gluten-free diet adherence, questionnaire reliability
- MeSH terms
- Patient Reported Outcome Measures, Adolescent, Attitude to Health, Celiac Disease, Child, Cross-Sectional Studies, Family, Female, Health Status, Health Surveys, Humans, Male, Patient Compliance, Quality of Life, Spain, Cost of Illness, Practice Guidelines as Topic, Diet, Gluten-Free, Culturally Competent Care
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