A comprehensive questionnaire for the assessment of health-related quality of life in coeliac disease (CDQL)
Abstract
Coeliac disease (CD) is a chronic immune-mediated disease in genetically susceptible individuals, induced by ingested gluten. The treatment for CD is a lifelong gluten-free diet (GFD). The GFD involves restrictions in diet that may impact on a person's Health-Related Quality of Life (HRQoL). Aim The aim of the present study was to develop the Coeliac Disease Quality of Life questionnaire (CDQL): a comprehensive CD-specific HRQoL measure that can be completed by children, adolescents, and adults or by proxy. Methods The questionnaire was developed in three phases. In phase 1, focus group methods and qualitative analysis of verbatim transcripts generated CD-specific items for a prototype instrument to sensitively captured patient concerns. In phase 2, CD patients completed the prototype CDQL. The questionnaire was refined through analysis of data and cognitive interviewing. In phase 3, the final version of the CDQL was answered by Danish respondents. The psychometric properties of the CDQL were assessed, and the HRQoL data were analyzed. Results The CDQL was completed by 422 respondents. The CDQL has 12 patient background items, 2 generic HRQoL items, and 30 CD-specific HRQoL item. The CD-specific HRQoL items were distributed on eight scales with acceptable to excellent reliability. Comprehensiveness and understandability was shown by feedback from cognitive interviewing from children, adolescents, and adults. Content validity was ensured by involving patients and clinicians in…
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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 [105]
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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-citation
- Authors
- Skjerning, H., Hourihane, J., Husby, S., & DunnGalvin, A.
- Affiliations
- University of Southern Denmark (DK)
- University College Cork (IE)
- Corresponding author
- Husby, Steffen
- Venue
- Quality of Life Research
- Published
- 2017-07-05
- Volume
- 26
- Issue
- 10
- Pages
- 2831-2850
- ISSN
- 0962-9343 (ISSN-L)
- 1573-2649
- OpenAlex
- W2726088172
- Cited by
- 18
- References
- 4
- Citations by year
- 2025: 2 · 2024: 2 · 2023: 4 · 2022: 4 · 2021: 4 · 2020: 1 · 2019: 1
- FWCI
- 0.57
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Quality of Life Research (publishedVersion)
- PubMed (publishedVersion)
- University of Southern Denmark Research Portal (University of Southern Denmark) (submittedVersion)
- Funders
- Strategiske Forskningsråd (j.no. 2009-38/23364-2)
- Topics
- Health Sciences › Medicine › Gastroenterology › Celiac Disease Research and Management
- Social Sciences › Education › Health Education and Validation
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Keywords
- celiac disease, health-related quality of life, questionnaire development, psychometric properties, gluten-free diet, children and adolescents, proxy reporting, cognitive interviewing, content validity
- MeSH terms
- Adolescent, Adult, Celiac Disease, Child, Female, Humans, Male, Middle Aged, Pilot Projects, Psychometrics, Quality of Life, Surveys and Questionnaires, Diet, Gluten-Free, Young Adult
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