title: Quality of patient information leaflets for Down syndrome screening: A comparison between the UK and Thailand.
abstract: Prenatal screening tests can help to estimate the possibility of a pregnant woman having a baby with trisomy 21 (Down syndrome). As these tests are optional, it is essential that women are provided with appropriate verbal and written information to enable them to make an informed choice. In this study, we assessed the content and quality of Down syndrome screening information leaflets used by health professionals to provide information to pregnant women in the UK (26 leaflets) and Thailand (11 leaflets). We collected leaflets from health institutions and the Internet, and compared the topics covered in each one against recommendations for patient information on this topic. We also assessed the quality of each leaflet using the DISCERN Genetics tool. While the quality-rating score of the UK leaflets was significantly higher than the Thai leaflets, none of the leaflets included all the recommended topics; some contained erroneous material. In both countries, the quality of information can be improved to provide accurate information to women and their partners, which is essential to ensure prospective parents can make informed choices during pregnancy.
authors.affiliation: Bernadette de Lourdes School of Nursing Science, Assumption University of Thailand, Bangkok, Thailand.
authors.forename: Parvinee
authors.initials: P
authors.lastname: Saiklang
authors.affiliation: School of Nursing and Midwifery, Plymouth University, Plymouth, UK.
authors.forename: Heather
authors.initials: H
authors.lastname: Skirton
mesh_terms: D000328:Adult; D003430:Cross-Sectional Studies; D004314:Down Syndrome / Q000175:diagnosis*; D005260:Female; D006801:Humans; D010174:Pamphlets; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000379:methods*; D013785:Thailand; D006113:United Kingdom
keywords: Down syndrome; aneuploidy; antenatal screening; fetal; genetic nursing; prenatal screening; trisomy