The disconnect: infertility patients' information and the role they wish to play in decision making.
OBJECTIVE
To determine the preferred role in medical decision making of women undergoing fertility treatments and to establish whether their knowledge of treatments is adequate to inform their choices.


METHODS
Self-report survey of 404 women undergoing fertility treatments in 2 university hospitals and a private fertility clinic in Canada.


RESULTS
The women had been in fertility treatment for 2.3 +/- 2.6 years; 67.8% reported taking fertility drugs. Most (61.7%) women wanted to share knowledge equally with their doctors about possible fertility treatments. However, about half wanted to decide alone or mostly by themselves about the acceptability of treatment risks and benefits (56%), what treatments should be selected (49.8%), and when to conclude treatments (54.3%). In addition, 55.1% of the women did not know their personal eventual chances of pregnancy with fertility treatment or thought it was 50% or greater. Over half of the women (57.2%) who had taken fertility drugs were unaware of a possible link between fertility drugs and increased ovarian cancer risk. The majority of women (61.8%) who knew of this possible association reported that they learned about it from the print media. Women who knew of the association had a poor understanding of the strength of the evidence or the ability to detect or treat ovarian cancer successfully, and 88.3% thought they could reduce cancer risk by following their doctors' advice.


CONCLUSIONS
Despite these women's wishes to actively participate in fertility treatment decisions, they lacked the necessary information to do so meaningfully. Public health policymakers, professional and advocacy organizations, physicians, other healthcare providers, and women themselves must find ways to improve the general public's and patients' understanding about fertility treatment outcomes and risks.
Stewart
D E
DE
University of Toronto, Department of Obstetrics and Gynecology, Canada.
Rosen
B
B
Irvine
J
J
Ritvo
P
P
Shapiro
H
H
Murphy
J
J
Thomas
J
J
Robinson
G E
GE
Neuman
J
J
Deber
R
R
D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007247:Infertility, Female / Q000628:therapy*; D010358:Patient Participation; D011795:Surveys and Questionnaires