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 wo men undergoing fertility treatments and to establish whether their knowledg e 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; 6 7.8% reported taking fertility drugs. Most (61.7%) women wanted to share kn owledge equally with their doctors about possible fertility treatments. How ever, about half wanted to decide alone or mostly by themselves about the a cceptability 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 pregnanc y with fertility treatment or thought it was 50% or greater. Over half of t he women (57.2%) who had taken fertility drugs were unaware of a possible l ink 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 ha d a poor understanding of the strength of the evidence or the ability to de tect or treat ovarian cancer successfully, and 88.3% thought they could red uce cancer risk by following their doctors' advice. Conclusions: Despite these women's wishes to actively participate in fertil ity treatment decisions, they lacked the necessary information to do so mea ningfully. Public health policymakers, professional and advocacy organizati ons, physicians, other healthcare providers, and women themselves must find ways to improve the general public's and patients' understanding about fer tility treatment outcomes and risks.