TY - JOUR
T1 - Improving women's knowledge about prenatal screening in the era of non-invasive prenatal testing for Down syndrome - Development and acceptability of a low literacy decision aid
AU - Smith, Sian Karen
AU - Cai, Antonia
AU - Wong, Michelle
AU - Sousa, Mariana S.
AU - Peate, Michelle
AU - Welsh, Alec
AU - Meiser, Bettina
AU - Kaur, Rajneesh
AU - Halliday, Jane
AU - Lewis, Sharon
AU - Trevena, Lyndal
AU - Yanes, Tatiane
AU - Barlow-Stewart, Kristine
AU - Barclay, Margot
PY - 2018/12/17
Y1 - 2018/12/17
N2 - Background: Access to information about prenatal screening is important particularly in light of new techniques such as non-invasive prenatal testing (NIPT). This study aimed to develop and examine the acceptability of a low literacy decision aid (DA) about Down syndrome screening among pregnant women with varying education levels and GPs. Methods: We developed a DA booklet providing information about first-trimester combined testing, maternal serum screening, and NIPT. GPs and women participated in a telephone interview to examine the acceptability of the DA and measure screening knowledge before and after reading the DA. The knowledge measure was designed to assess whether women had understood the gist of the information presented in the decision aid. It comprised conceptual questions (e.g. screening tells you the chance of having a baby with Down syndrome) and numeric questions (e.g. the accuracy of different screening tests). Results: Twenty-nine women and 18 GPs participated. Regardless of education level, most women found the booklet 'very' clearly presented (n = 22, 76%), and 'very' informative (n = 23, 80%). Overall, women's conceptual and numeric knowledge improved after exposure to the DA, from 4% having adequate knowledge to 69%. Women's knowledge of NIPT also improved after receiving the decision aid, irrespective of education. Most GPs found it 'very' clearly presented (n = 13, 72%), and that it would 'very much' facilitate decision-making (n = 16, 89%). Conclusions: The DA was found to be acceptable to women as well as GPs. A comprehensive evaluation of the efficacy of the decision aid compared to standard information is an important next step. Strategies are needed on how to implement the tool in practice.
AB - Background: Access to information about prenatal screening is important particularly in light of new techniques such as non-invasive prenatal testing (NIPT). This study aimed to develop and examine the acceptability of a low literacy decision aid (DA) about Down syndrome screening among pregnant women with varying education levels and GPs. Methods: We developed a DA booklet providing information about first-trimester combined testing, maternal serum screening, and NIPT. GPs and women participated in a telephone interview to examine the acceptability of the DA and measure screening knowledge before and after reading the DA. The knowledge measure was designed to assess whether women had understood the gist of the information presented in the decision aid. It comprised conceptual questions (e.g. screening tells you the chance of having a baby with Down syndrome) and numeric questions (e.g. the accuracy of different screening tests). Results: Twenty-nine women and 18 GPs participated. Regardless of education level, most women found the booklet 'very' clearly presented (n = 22, 76%), and 'very' informative (n = 23, 80%). Overall, women's conceptual and numeric knowledge improved after exposure to the DA, from 4% having adequate knowledge to 69%. Women's knowledge of NIPT also improved after receiving the decision aid, irrespective of education. Most GPs found it 'very' clearly presented (n = 13, 72%), and that it would 'very much' facilitate decision-making (n = 16, 89%). Conclusions: The DA was found to be acceptable to women as well as GPs. A comprehensive evaluation of the efficacy of the decision aid compared to standard information is an important next step. Strategies are needed on how to implement the tool in practice.
KW - Decision aid
KW - Down syndrome
KW - Informed decision-making
KW - Low literacy
KW - Non-invasive prenatal testing (NIPT)
KW - Prenatal screening
KW - Prenatal testing
KW - Trisomy 21
UR - http://www.scopus.com/inward/record.url?scp=85058666389&partnerID=8YFLogxK
U2 - 10.1186/s12884-018-2135-0
DO - 10.1186/s12884-018-2135-0
M3 - Article
C2 - 30558569
AN - SCOPUS:85058666389
SN - 1471-2393
VL - 18
SP - 1
EP - 14
JO - BMC Pregnancy and Childbirth
JF - BMC Pregnancy and Childbirth
IS - 1
M1 - 499
ER -