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This study investigated people’s experiences of living with coeliac disease and their experiences of using healthcare services to diagnose and manage their condition.  By asking people with coeliac disease about their experiences, the quality of services and how they might be improved was examined.  The impact of coeliac disease on health-related quality of life and the relationship between experiences of healthcare and health-related quality of life was also explored.  A mixed methods approach, utilising semi-structured interviews and cross-sectional surveys, was undertaken to achieve these aims.  It is intended that the results of the study will be used to shape policy guidelines and future initiatives aimed at improving the quality of care provided to patients with coeliac disease.

Research update

The main survey exploring experiences of living with coeliac disease and using healthcare services to diagnose and manage the condition is now closed.  Data analysis is complete and the results of the study are being written up for publication in scientific journals.  A summary of the results will also be presented here in due course. 

As part of the study, the Coeliac Disease Assessment Questionnaire (CDAQ) was developed.  Further details about the measure can be found here .

Presentations

‘Patients’ experiences of healthcare services in coeliac disease’ (PDF) – a poster presented at the Health Services Research Network Symposium in Nottingham, June 2013.