Decisional needs assessment regarding Down syndrome prenatal testing: a systematic review of the perceptions of women, their partners and health professionals.
OBJECTIVE
To identify decisional needs of women, their partners and health professionals regarding prenatal testing for Down syndrome through a systematic review.


METHODS
Articles reporting original data from real clinical situations on sources of difficulty and/or ease in making decisions regarding prenatal testing for Down syndrome were selected. Data were extracted using a taxonomy adapted from the Ottawa Decision-Support Framework and the quality of the studies was assessed using Qualsyst validated tools.


RESULTS
In all 40 publications covering 32 unique studies were included. The majority concerned women. The most often reported sources of difficulty for decision-making in women were pressure from others, emotions and lack of information; in partners, emotion; in health professionals, lack of information, length of consultation, and personal values. The most important sources of ease were, in women, personal values, understanding and confidence in the medical system; in partners, personal values, information from external sources, and income; in health professionals, peer support and scientific meetings.


CONCLUSIONS
Interventions regarding a decision about prenatal testing for Down syndrome should address many decisional needs, which may indeed vary among the parties involved, whether women, their partners or health professionals. Very little is known about the decisional needs of partners and health professionals.
St-Jacques
Sylvie
S
The CanGèneTest Research Consortium on Genetic Laboratory Services and Centre de recherche du CHUQ-HSFA, Québec City, Québec, Canada. sylvie.st-jacques@crsfa.ulaval.ca
Grenier
Sonya
S
Charland
Marc
M
Forest
Jean-Claude
JC
Rousseau
François
F
Légaré
France
F
D003657:Decision Making; D004314:Down Syndrome / Q000175:diagnosis*; D005260:Female; D006801:Humans; D008297:Male; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000523:psychology*