Information and involvement preferences of women in their 40s before their first screening mammogram

Background: Informed decision making regarding screening mammography is recommended for women in their 40s; however, what information women want and how much involvement in decision making they prefer are not known. Methods: Surveys were mailed to women aged 40 to 44 scheduled for their first screening mammogram. Women were members of a large New England health maintenance organization and received medical care at a multispecialty practice in the greater Boston area. Outcome measures included information needs and decisional control preferences. Results: Ninety-six women responded. Of 93 identifying their ethnicity, 62 (67%) were white, 18 (19%) were black, 10 (11%) were Asian, 2 (2%) were Hispanic, and 1 (1%) was other. Most (91% [85/93]) wanted their primary care provider to be the source of information regarding screening mammography. Information needs included the next steps to take if the mammogram result was abnormal (89%), how the woman would be contacted (75%), and how quickly (71%). Women also wanted to know about the harms of false-positive (84%) and false-negative (82%) results, benefits of screening in prolonging life (73%), and risk of getting breast cancer (69%). Most women preferred to make the screening decision after considering their medical provider's opinion (38%) or together with their medical provider (46%); fewer than 10% preferred that the decision be made by the woman or her provider alone. Conclusions: Women cited specific information needs before initiating screening mammography, including screening logistics and potential harms and benefits of screening. They also wanted to participate in the decision-making process. Effective methods should be developed for communicating desired information before screening.