How much medical information does a woman understand and retain about her breast cancer diagnosis? UNC scientists participated in a four-institution study involving 440 women with early-stage breast cancer and found that breast cancer survivors had limited knowledge about their surgical options, including an understanding of something as important as the risk of recurrence.
Their findings are reported in the January 2012 issue of the Journal of the American College of Surgeons.
For breast surgery, the quality of decisions can be judged by the extent to which patients are informed, involved in decision making and undergoing treatment that reflects their goals.
Clara Lee, MD, MPP, FACS, associate professor of surgery, and first author of the study, explains, “The choice between mastectomy and partial mastectomy is a great opportunity for something called shared decision making. Shared decision making is a style of clinical decision making in which the provider AND the patient contribute to the decision, rather than just the provider telling the patient what to have. Shared decision making can be challenging because it puts the onus on patients to get involved, and it puts the onus on providers to find out just what their patients care about most. But it results in better decisions and higher satisfaction with decisions.”
Lee is a member of UNC Lineberger Comprehensive Cancer Center.
“Some breast centers routinely provide decision aids to early-stage breast cancer patients who have a choice between mastectomy and partial mastectomy.”
In the study, 440 patients with Stage I/II breast cancer responded to a mailed survey called the Decision Quality Instrument. This survey measured knowledge, goals and involvement in surgical treatment decisions. Results showed that 45.9 percent of respondents knew that local recurrence risk is higher after breast conservation surgery than with mastectomy. Most participants (89.0 percent) had treatment concordant with their goals. Participants reported more frequent discussion of partial mastectomy and its advantages than of mastectomy, and 48.6 percent report being asked their preference.
Lee thinks physicians, medical centers and practices should develop decision support systems for these kinds of decisions. “Decision support can come in a number of forms, including patient decision aids, decision support coaches, and consultation planning.” Decision aids are tools, either in paper, video, or computerized form, that give patients information, help them clarify what is most important to them, and prepare them for the consultation with their provider. Lee says, “Some breast centers routinely provide decision aids to early-stage breast cancer patients who have a choice between mastectomy and partial mastectomy.”
Other UNC authors are Nesochi Adimoral, BA, currently a UNC medical student, and David Ollila, MD, professor of surgery and co-director of the UNC Breast Center.
Other institutions participating in the study included: the University of California at San Francisco, Dana-Farber Cancer Institute, and Massachusetts General Hospital. The research was funded by a grant from the not-for-profit Foundation for Informed Medical Decision Making and NIH/ National Center for Research Resources.