title: Psychological and social impact of carrier screening for cystic fibrosis among pregnant woman--a pilot study.
abstract: The aim of the current study was to assess the psychological and social impact of delta F508 carrier screening for cystic fibrosis among pregnant women. The impact of carrier screening was assessed in terms of anxiety, perception of health, reproductive decisions, retention of results, and sharing of information with relatives by two self-administered questionnaires sent to 160 women with a positive and 200 women with a negative test result. While no attempt was made to make women accept or decline testing, 22-28% of those tested found it difficult to reject the test when offered. Women with a positive test result became more anxious than did women with a negative result. However, their perception of future health did not change. Most carriers shared the information about their result with relatives and friends. Carriers had the best retention of pretest information and test result, although a third of the carriers believed that they could not have a child with cystic fibrosis when the partner's test for delta F508 and five other mutations were negative. Most women with a negative test result did not remember their result correctly a year after testing. Few women with a positive result changed their reproductive plans because of the result of the test.
authors.affiliation: Department of Psychology, Royal Danish College of Education, Copenhagen, Denmark.
authors.forename: H
authors.initials: H
authors.lastname: Clausen
authors.forename: N J
authors.initials: NJ
authors.lastname: Brandt
authors.forename: M
authors.initials: M
authors.lastname: Schwartz
authors.forename: F
authors.initials: F
authors.lastname: Skovby
mesh_terms: D001294:Attitude to Health; D003550:Cystic Fibrosis / Q000235:genetics* / Q000523:psychology*; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D006579:Heterozygote; D006801:Humans; D008297:Male; D010865:Pilot Projects; D011247:Pregnancy; D011296:Prenatal Diagnosis; D011795:Surveys and Questionnaires