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  4. The humanistic and economic burden of coeliac disease in the UK: a follow up study

The humanistic and economic burden of coeliac disease in the UK: a follow up study

Principal Investigator: Dr Mara Violato, Senior Researcher

Institution: Health Economics Research Centre, Nuffield Department of Population Health, University of Oxford

Research classification: Management of coeliac disease and dermatitis herpetiformis

Project start & duration: March 2015 (13 months)

Grant awarded: £50.3k

Coeliac disease is often diagnosed after a long period of symptoms, which can cause significant discomfort and anxiety for the affected individuals and their families, and interfere with everyday life.

A delayed diagnosis generates increased cost to the NHS for frequent healthcare use, and after diagnosis, for NHS prescribing of gluten-free staple foods, as the only current treatment is lifelong, strict adherence to a gluten-free diet. A substantial part of the economic costs, after diagnosis, is also passed on to the patient, that is ‘condition related’ expenses and for some this is heightened as a consequence of recent restrictions on gluten-free prescribing.

A new survey will be undertaken by people with coeliac disease and their carers. The results will be compared with a similar survey carried out in 2006 and will be used to evaluate how patients’ quality of life, before and after diagnosis, varies regionally, over time and by socioeconomic group.

The project will aim to quantify the costs of coeliac disease to patients and the NHS and the impact that all this has on patients’ families, which is often forgotten in medical research.

It is hoped that this information can be used to provide an increased awareness of the emotional and economic impact of coeliac disease and that the Government, the general public, workplaces, schools and eating out venues take coeliac disease seriously and in turn make the everyday lives of people with coeliac disease more comfortable.

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