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Open Access Highly Accessed Research article

Delay to celiac disease diagnosis and its implications for health-related quality of life

Fredrik Norström1*, Lars Lindholm1, Olof Sandström12, Katrina Nordyke1 and Anneli Ivarsson1

Author affiliations

1 Department of Public Health and Clinical Medicine, Epidemiology and Global Health, Umeå University, Umeå, Sweden

2 Department of Clinical Sciences, Pediatrics, Umeå University, Umeå, Sweden

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Citation and License

BMC Gastroenterology 2011, 11:118  doi:10.1186/1471-230X-11-118

Published: 7 November 2011

Abstract

Background

To determine how the delay in diagnosing celiac disease (CD) has developed during recent decades and how this affects the burden of disease in terms of health-related quality of life (HRQoL), and also to consider differences with respect to sex and age.

Methods

In collaboration with the Swedish Society for Coeliacs, a questionnaire was sent to 1,560 randomly selected members, divided in equal-sized age- and sex strata, and 1,031 (66%) responded. HRQoL was measured with the EQ-5D descriptive system and was then translated to quality-adjusted life year (QALY) scores. A general population survey was used as comparison.

Results

The mean delay to diagnosis from the first symptoms was 9.7 years, and from the first doctor visit it was 5.8 years. The delay has been reduced over time for some age groups, but is still quite long. The mean QALY score during the year prior to initiated treatment was 0.66; it improved after diagnosis and treatment to 0.86, and was then better than that of a general population (0.79).

Conclusions

The delay from first symptoms to CD diagnosis is unacceptably long for many persons. Untreated CD results in poor HRQoL, which improves to the level of the general population if diagnosed and treated. By shortening the diagnostic delay it is possible to reduce this unnecessary burden of disease. Increased awareness of CD as a common health problem is needed, and active case finding should be intensified. Mass screening for CD might be an option in the future.