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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).
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.
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.
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 the development of the questionnaire. Sensitivity of the questionnaire was demonstrated in differences found between children, adolescents, and adult’s perception of their HRQoL in relation to having CD.
The CDQL comprehensively measures HRQoL in CD, and is psychometrically robust. The questionnaire may prove useful in tracking HRQoL in CD across age groups.
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Husby, S., Koletzko, S., Korponay-Szabó, I. R., Mearin, M. L., Phillips, A., Shamir, R., et al. (2012). European society for pediatric gastroenterology, hepatology, and nutrition guidelines for the diagnosis of coeliac disease. Journal of Pediatric Gastroenterology and Nutrition, 54(1), 136–160. CrossRefPubMed
Häuser, W., Stallmach, A., Caspary, W. F., & Stein, J. (2007). Predictors of reduced health-related quality of life in adults with coeliac disease. Alimentary Pharmacology & Therapeutics, 25(5), 569–578. CrossRef
Sverker, A., Hensing, G., & Hallert, C. (2005). “Controlled by food”- lived experiences of coeliac disease. J Hum Nutr Diet Off J Br Diet Assoc., 18(3), 171–180. CrossRef
WHO. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19-22 June, 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the ´, no. 2, p. 100) and entered into force on 7 April 1948. World Health Organization; 1946.
WHO. (1993). Study protocol for the World Health Organization project to develop a quality of life assessment instrument (WHOQOL). Quality of Life Research, 2(2), 153–159. CrossRef
DunnGalvin, A., de BlokFlokstra, B. M. J., Burks, A. W., Dubois, A. E. J., & Hourihane, J. O. (2008). Food allergy QoL questionnaire for children aged 0-12 years: content, construct, and cross-cultural validity. Clinical & Experimental Allergy, 38(6), 977–986. CrossRef
Kurppa, K., Collin, P., Mäki, M., & Kaukinen, K. (2011). Celiac disease and health-related quality of life. Expert Review of Gastroenterology & Hepatology, 5(1), 83–90. CrossRef
Barratt, S. M., Leeds, J. S., & Sanders, D. S. (2011). Quality of life in Coeliac Disease is determined by perceived degree of difficulty adhering to a gluten-free diet, not the level of dietary adherence ultimately achieved. Journal of Gastrointestinal and Liver Diseases, 20(3), 241–245. PubMed
Dorn, S. D., Hernandez, L., Minaya, M. T., Morris, C. B., Hu, Y., Leserman, J., et al. (2010). The development and validation of a new coeliac disease quality of life survey (CD-QOL). Alimentary Pharmacology & Therapeutics, 31(6), 666–675. CrossRef
Mokkink, L. B., Terwee, C. B., Patrick, D. L., Alonso, J., Stratford, P. W., Knol, D. L., et al. (2010). The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. Journal of Clinical Epidemiology, 63(7), 737–745. CrossRefPubMed
Glaser, B. G., & Strauss, A. L. (2009). The discovery of grounded theory: Strategies for qualitative research (p. 283). Piscataway: Transaction Publishers.
Kvale, S., & Brinkmann, S. (2009). InterViews: Learning the craft of qualitative research interviewing (p. 377). Thousand Oaks: SAGE Publications.
Willis, G. (2005). Cognitive interviewing: A tool for improving questionnaire design. Thousand Oaks: SAGE Publications, Inc. CrossRef
Schaeffer, N. C., & Presser, S. (2003). The Science of asking questions. Annual Review of Sociology, 29(1), 65–88. CrossRef
Riva, G., Teruzzi, T., & Anolli, L. (2003). The use of the internet in psychological research: Comparison of online and offline questionnaires. CyberPsychology & Behavior, 6(1), 73–80. CrossRef
Statistics Denmark. (2011). Befolkningens brug af internet 2010 (p. 69). Copenhagen: Danmarks Statistik.
Young, N. L., Varni, J. W., Snider, L., McCormick, A., Sawatzky, B., Scott, M., et al. (2009). The internet is valid and reliable for child-report: An example using the Activities Scale for Kids (ASK) and the Pediatric Quality of Life Inventory (PedsQL). Journal of Clinical Epidemiology, 62(3), 314–320. CrossRefPubMed
Raat, H., Mangunkusumo, R. T., Landgraf, J. M., Kloek, G., & Brug, J. (2007). Feasibility, reliability, and validity of adolescent health status measurement by the Child Health Questionnaire Child Form (CHQ-CF): Internet administration compared with the standard paper version. Quality of Life Research, 16(4), 675–685. CrossRefPubMedPubMedCentral
IBM. (2013). SPSS statistics for windows. Armonk: IBM Corp.
R Core Team. R: A language and environment for statistical computing [Internet]. Vienna, Austria: R foundation for statistical computing; 2016. Retrieved from: https://www.R-project.org.
Faul, F. (2014). G*Power. Germany: Universität Kiel.
Malý, M., & Vondra, V. (2006). Generic versus disease-specific instruments in quality-of-life assessment of chronic obstructive pulmonary disease. Methods of Information in Medicine, 45(2), 211–215. PubMed
Stead, M., McDermott, L., Mackintosh, A. M., & Adamson, A. (2011). Why healthy eating is bad for young people’s health: Identity, belonging and food. Social Science & Medicine, 72(7), 1131–1139. CrossRef
de Wit, M., Delemarre-van de Waal, H. A., Bokma, J. A., Haasnoot, K., Houdijk, M. C., Gemke, R. J., et al. (2008). Monitoring and discussing health-related quality of life in adolescents with type 1 diabetes improve psychosocial well-being: A randomized controlled trial. Diabetes Care, 31(8), 1521–1526. CrossRefPubMedPubMedCentral
de Wit, M., Delemarre-van de Waal, H. A., Bokma, J. A., Haasnoot, K., Houdijk, M. C., Gemke, R. J., et al. (2010). Follow-up results on monitoring and discussing health-related quality of life in adolescent diabetes care: Benefits do not sustain in routine practice. Pediatric Diabetes, 11(3), 175–181. CrossRefPubMed
- A comprehensive questionnaire for the assessment of health-related quality of life in coeliac disease (CDQL)
- Springer International Publishing