It is estimated that between 1 and 3 percent of the population have the disease, but the number of unreported cases is high and most sufferers go undiagnosed. Sweden has higher rates of coeliac disease than the rest of the western world. The benefits of screening for celiac disease in the general population is controversial and the consequences of being diagnosed when screening has been unclear. Sweden has had an epidemic of celiac disease. Therefore, researchers at Umea University conducted the population-based research project ETICS, Exploring the Iceberg of Celiacs in Sweden, to investigate issues arising with celiac disease and screening for the disease. All sixth graders in five regions in Sweden were invited to participate in the study during 2005/2006 and 2009/2010. In her thesis, Katrina Nordyke examines the experiences and results of screening to detect celiac disease in these children. She notes that the results are ambiguous. “Most kids can handle the concerns of the screening examination and thoughts about the disease may present. However, there was no consensus that the detection of disease and treatment results in an increased health-related quality of life.”, says Katrina Nordyke. The children involved in ETICS wrote short stories where they described their screening experience before they received their screening results. The stories show that some children experienced the fear and anxiety, but as a whole they managed the screening well. The kids also filled out surveys about their health-related quality of life at the time of the screening and one year after diagnosis. Finally, those who received a celiac diagnosis from the screening wrote new stories one and five years after diagnosis.

official statement http://www.news-medical.net/news/20131116/Research-paper-highlights-experiences-results-of-celiac-disease-screening-in-young-children.aspx

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