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

Dr Mara Violato is a senior researcher in health economics and research lecturer at the University of Oxford.

What were the main issues your research was seeking to address?

To evaluate whether the time to medical diagnosis, from the appearance of the first symptoms associated with coeliac disease, has shortened over time.

To assess how coeliac disease affects people’s quality of life, before and after diagnosis, and how this varies over time, by geographic area of the UK, and by socioeconomic group.

The results will be compared with a similar survey carried out in 2006.

The project will also aim to quantify the costs of coeliac disease to patients and the NHS and the impact that has on patients’ families.

How successful was the project in achieving this?

Very successful, as we managed to conduct a large survey to collect important evidence based information for the aims of the project.

What are the key things that were learnt as a result of this project?
  • Despite recent improvements in methods to detect coeliac disease, it still takes on average 13 years, from onset of symptoms, to achieve a diagnosis.
  • The average score for quality of life was reported lower before diagnosis and improved by about 30% after diagnosis, to a level very similar to the quality of life reported by the general population of England.
  • Regions where the average quality of life before diagnosis was lower than the UK average, were Northern Ireland, Scotland, the North East of England, the West Midlands, and the London area.
  • The highest quality of life improvement between pre- and post diagnosis, was registered in the London area.
  • The lower the family income, the lower the health score reported by the participants. Differences in health status by income were even more noticeable in the group of participants who relied on gluten free food on prescription and had their prescriptions restricted.
  • When asked how restrictions on prescriptions of gluten free food affected the affordability of an adequate gluten free diet, 21% of respondents admitted they could not always afford to purchase the same amount or variety of gluten free food that they were used to having on prescription, and another 21% were only just managing.
  • After diagnosis, people with coeliac disease experienced a number of out-of-pocket expenses related to the management of their health condition. These included costs of private medical consultations, over-the-counter medications, gluten free products, nutritional supplements, and books, DVDs or videos on symptoms management.
  • Coeliac disease and its management was reported to have a negative impact on the people (family and friends) close to the person with the condition. They felt limited in a number of daily situations (eg restaurants, holidays and family events), and 61% of them reported to be moderately or extremely worried about the person’s health and wellbeing following her/his diagnosis.
How will this project benefit patients?

This research provides up to date evidence to support raising the awareness of the emotional and economic burden that patients and the NHS have to bear and the impacts of all this on patients’ families. The evidence will also be of use to researchers evaluating the cost effectiveness of possible future prevention, treatment or cure.

How has the funding from Coeliac UK made a difference?

We are extremely grateful to Coeliac UK for funding this study and for practical support in conducting the survey, without this support the survey would not have happened.

Principle Investigator: Dr Mara Violato

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

Grant Awarded: £50.3k