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  6. Measuring quality of life in coeliac disease: the development of the Coeliac Disease Assessment Questionnaire (CDAQ)

Measuring quality of life in coeliac disease: the development of the Coeliac Disease Assessment Questionnaire (CDAQ)

Helen CrockerBiography

Helen Crocker is a Research Officer in the Nuffield Department of Population Health at the University of Oxford. Helen joined the department in 2010, where she was involved in a study piloting the use of patient reported outcome measures (PROMs) in six different long term conditions in primary care. She is currently undertaking a DPhil, which is exploring quality of life in coeliac disease and patients’ experiences of healthcare services accessed to diagnose and manage the condition. As part of the DPhil, she has developed a PROM (the Coeliac Disease Assessment Questionnaire (CDAQ)) to assess quality of life (QoL) in adults with coeliac disease.

Alongside her DPhil, she is conducting a study, part funded by Coeliac UK, to assess the CDAQ’s responsiveness to change. Prior to commencing research on PROMs, Helen completed a Master’s degree in Social Science Research Methods at Cardiff University.

Abstract

Measuring QoL in people with coeliac disease allows us to understand the impact of the condition from the individual’s perspective. This provides a fuller picture of the condition than can be achieved by assessing biomedical factors alone. QoL is measured using PROMs, which usually take the form of short questionnaires. A review identified two existing disease specific PROMs that measure QoL in adults with coeliac disease. Limitations were identified with both measures and therefore, a new measure, the CDAQ, was developed according to current development guidelines.

Candidate items for the CDAQ were developed following qualitative interviews with adults with coeliac disease, and refined through expert panels, cognitive interviews, and a translatability assessment. A survey of the draft CDAQ enabled the number of items to be reduced and scales to be generated. The final questionnaire has 32 items addressing five dimensions: stigma (8 items); dietary burden (8 items); symptoms (5 items); social isolation (5 items); and worries and concerns (6 items). The CDAQ is suitable for use in research studies, including clinical trials, and future plans include evaluating the questionnaire for use in clinical practice. The development of the CDAQ is presented.

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