About two-thirds of women diagnosed with early stage breast cancer want to take part in making decisions about their treatment, according to a new survey of patients from five different countries.
Some of these women want complete control over making treatment choices while others want to share the decision with their doctor—yet only a minority of them actually get the level of involvement they are hoping for.
"Physicians should be trying to elicit patient preferences," said Richard Brown, the lead author of the study and an assistant professor at Virginia Commonwealth University.
Brown's team asked 683 women who were recently diagnosed with breast cancer what kind of role they would like to have in making decisions about their treatment: would they like to have total control, a shared role with their doctor, or have the doctor make the choices.
After the women met with their physicians, the researchers followed up to ask how their visit went and whether their preferences for how involved they would like to be in the future had changed.
Only 28 out of every 100 women initially wanted to delegate the decision to their doctor, but 46 out of every 100 reported that their doctor ended up making the decision.
"I think it's not so surprising that the actual decision making tended to be more doctor-directed than the patients wanted," said Dr. Michael Barry, president of the Foundation for Informed Medical Decision Making, who was not involved in this study.
"I think sometimes clinicians think most patients don't want to participate in decisions, particularly around serious things like cancer, and that's not the finding here or in previous studies," he told Reuters Health.
Among the 282 women who changed their preference after the consultation with their doctor, a little more than half of them shifted toward a greater involvement.
A third of them originally wanted their doctor to make the decision and later preferred to either share it or take control themselves, and one in five who originally wanted to share the decision later preferred to make the choice on their own.
When women had more involvement than they originally intended, they "were less conflicted over the decision, more satisfied with their ultimate decision, more satisfied with the consultation communication" than women who had less involvement, the authors write in the Journal of Clinical Oncology.
Barry said the findings make sense for women with early-stage breast cancer, because there are often multiple, effective options for treatment.
For instance, the risk of death might be the same if a woman has her breast removed compared to having her breast preserved, but one woman might prioritize keeping her breast and be more willing to go through the extra surgeries and radiation.
"When patients then understand there are multiple reasonable options for treatment of early stage breast cancer...usually you'll see more desire for participatory decision making," Barry said.
After they had the consultation with their doctor, about a third of the women in the study continued to want their physicians to have control over the decision.
"The preference to leave the decision to the physician is a perfectly reasonable decision to make," Brown told Reuters Health.
He and his colleagues note in the new report that they intend to pursue future studies of patients with other cancers, especially those with limited treatment options.