Knowledge and Attitudes of Women towards Cystic Fibrosis

Abstract

Background: Cystic fibrosis is the most common fatal inherited disease in European Caucasians. It is estimated that more than 600,000 Greeks are carriers of cystic fibrosis, more than 700 children and young adults are suffering from cystic fibrosis, and approximately 70-90 new cases are diagnosed every year in Greece. Aim: To assess the knowledge and attitudes of pregnant women and women planning a pregnancy, about cystic fibrosis and carrier screening. Method: This cross-sectional study was conducted between April 2010 and June 2010 and the sample consisted of 120 women. Questionnaires were completed by women attending the private offices of gynaecologist. The response rate was 85% and the Cronbach’s coefficient alpha for the questionnaire was 0.65. Statistical analysis included chi-square test, Fisher’s exact test, t-test, analysis of variance and Pearson’s correlation coefficient. Results: Of the respondents, 58% reported that they were informed about cystic fibrosis, while only 12.5% were aware of their carrier status. Ninety-six percent of the respondents identified the importance and the necessity of carrier screening for cystic fibrosis even in an obligatory form. Participants with a higher educational level were better informed about cystic fibrosis (p=0.001), knew whether they were cystic fibrosis carriers (p=0.05), and considered that prenatal screening for cystic fibrosis carriers should be obligatory (p=0.007). Younger women, women with a higher educational level and those who reported that they have been informed about cystic fibrosis, had more knowledge about the disease (p=0.03, p=0.024 and p<0.001, respectively). The main reasons for choosing prenatal screening were family history of cystic fibrosis and the recommendation of health professionals, while ignorance about the disease appeared to be the main reason for not choosing screening. Fifty-seven percent of the respondents indicated a willingness to terminate a pregnancy in the case that both the woman and her spouse were found to be cystic fibrosis carriers during pregnancy. Conclusions: The findings of this study reveal the need for further education on cystic fibrosis and introduction of appropriate prenatal screening for cystic fibrosis in order to reduce the frequency of occurrence of the disease.