3 September 2018

Once again we’d like to thank our members for their dedication and support for research into coeliac disease. A recent publication from researchers at the University of Oxford reports on the development of the Coeliac Disease Assessment Questionnaire (CDAQ) involving our members.

The CDAQ is a patient reported outcome measure (PROM), which provides important insight from the patient’s viewpoint about their symptoms and wellbeing, in addition to clinical forms of assessment such as blood tests.

Other PROMs for coeliac disease have been developed, but unlike the CDAQ, these did not meet the internationally recognised standards for developing a PROM set by the US Food and Drug Administration. The CDAQ is the first PROM for coeliac disease to meet these standards.

The development of the CDAQ was undertaken in four stages:

• Interviews with 23 adults with coeliac disease informed the development of potential items to be assessed in the questionnaire.
• Items were refined following input from experts in coeliac disease, further interviews with people with the condition and a review of how well the PROM can be adapted for use in other languages / countries.
• A survey of Coeliac UK members then provided data to inform the researchers as to which items would be the most useful for inclusion in the CDAQ.
• A follow up survey of Coeliac UK members provided data to assess the reliability and validity of the CDAQ.

We hope the PROM can help measure more accurately the actual impact of a treatment as experienced by the patient – something that clinical measures on their own are not always able to do. And, as research gathers pace, it’s important that we have the right tools to measure their effectiveness.

The researchers are currently completing the report on the CDAQ’s ability to assess a person’s quality of life over time where there may be a change, eg at diagnosis and then again six months later. We will bring more news, when available.

_Reference:

_{Crocker H, Jenkinson C, Peters M. Quality of life in coeliac disease: item reduction, scale development and psychometric evaluation of the Coeliac}

_{Disease Assessment Questionnaire (CDAQ). Aliment Pharmacol Ther. 2018;00:1–11. https://doi.org/10.1111/apt.14942}