title: Information and knowledge about Down syndrome among women and partners after first trimester combined testing.
abstract: We assessed reasons among women and partners for choosing combined ultrasound-biochemistry testing, information and knowledge about Down syndrome and decisions concerning invasive procedures and termination of pregnancy in a prospective cohort study in Uppsala County. In all 105 pregnant women and 104 partners coming for a combined ultrasound-biochemistry test answered a questionnaire. The most common reason for a combined ultrasound-biochemistry test was "to perform all tests possible to make sure the baby is healthy". Internet and midwives were the most common sources of information. Seventy-two percent had not received information on what it means to live with a child with Down syndrome. Many expectant parents perceived information as insufficient. Both women and partners had varying or low levels of knowledge about medical, cognitive and social consequences of Down syndrome. Twenty-five percent had not decided on an invasive test if indicated and only 42% would consider termination of pregnancy with a Down syndrome diagnosis.
authors.affiliation: Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
authors.forename: Ellen
authors.initials: E
authors.lastname: Ternby
authors.forename: Charlotta
authors.initials: C
authors.lastname: Ingvoldstad
authors.forename: Göran
authors.initials: G
authors.lastname: Annerén
authors.forename: Peter
authors.initials: P
authors.lastname: Lindgren
authors.forename: Ove
authors.initials: O
authors.lastname: Axelsson
mesh_terms: D003657:Decision Making; D004314:Down Syndrome / Q000175:diagnosis* / Q000523:psychology; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D010353:Patient Education as Topic / Q000379:methods; D011247:Pregnancy; D011261:Pregnancy Trimester, First / Q000523:psychology; D011295:Prenatal Care / Q000379:methods; D011296:Prenatal Diagnosis / Q000379:methods / Q000523:psychology*
keywords: Down syndrome; Prenatal screening; antenatal care and diagnosis; combined ultrasound and biochemistry test; education; informed decision