Participants of coeliac disease mass screening surveyed

Rates of undiagnosed coeliac disease in the community are thought to be high, with potentially serious health implications. Mass screening for the disease has long been debated as a public health intervention but remains controversial. A recent study was conducted in Sweden to explore for the first time the experiences of those who actually receive a diagnosis of coeliac disease through a mass screening program and their attitudes towards possible future mass screening in the community.

The researchers invited 145 adolescents with coeliac disease (detected via school-based screening) and their parents to participate in the study which comprised questionnaires and focus group meetings. The median age of the adolescents who participated was 14.6 years and the median time since diagnosis was almost 16 months.

The incentive to participate in the mass screening program was found to be non-personal benefits, and when a positive diagnosis was received it was generally met with surprise. Many of the adolescents reported feeling resentful and scared at the time of diagnosis. However at the time of the follow-up survey, the most predominant reaction was a feeling of gratitude for being made aware of the diagnosis.

The different perspectives reported by those who participated in the study are discussed in the paper which is available online with free access.

The study authors believe understanding the perspectives of those who have received a coeliac diagnosis via a mass screening program will help in identifying difficulties associated with this experience and help to improve the implementation of such programs in the future.

Reference: Rosen et al. 2011. BMC Public Health. Vol.11. DOI:10.1186/1471-2458-11-822. This paper can be accessed freely via the BiodMedCentral website.

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