More than one in five women with early-stage breast cancer said they were given too much responsibility for treatment-related decisions and ended up regretting the choices they made, according to a new study in the November issue of the Journal of General Internal Medicine.
Researchers said the findings don’t mean women should not be fully informed about their treatment options, but rather that doctors may need to find new strategies to communicate with patients, especially those who are less educated.
“Some women may feel overwhelmed or burdened by treatment choices, particularly if they are not also given the tools to understand and weigh the benefits and harms of these choices,” according to researchers led by Jennifer Livaudais.
Her team from the Mount Sinai School of Medicine in New York surveyed 368 women who had just had surgery for early-stage breast cancer at one of eight New York City hospitals, and again six months later.
The majority said they typically had trouble understanding medical information and less than one-third knew the possible benefits of surgery, radiation and chemotherapy, Livaudais and her colleagues found.
Lack of both “health literacy” and knowledge about treatment benefits was common among the 21 percent of women who said they had too much responsibility for decision-making, as well as among the seven percent who felt they didn’t have enough responsibility.
Women who were poor, non-white or didn’t finish high school were also more likely to feel that they had either too much or too little say in their treatment.
Close to two-thirds of women on both ends of the spectrum had some regret about their original treatment decisions six months down the line. That compared to one-third of women who originally said they had a “reasonable amount” of decision-making responsibility.
According to the National Cancer Institute, one in eight women will be diagnosed with breast cancer at some point in her life, with a higher risk among those with certain genetic mutations.
Dr. Steven Katz, who has studied cancer-related decision-making at the University of Michigan in Ann Arbor, said that compared to past years, doctors now have better ways to tailor treatment to individual patients. But that also means treatment options are based on more convoluted information.
“The treatments are linked in complicated ways, and the information that doctors draw on to make recommendations has increasingly become more and more complex,” Katz told Reuters Health.
He said that for patients trying to make the best treatment choices, the smartest thing they can do is have a team of doctors – an experienced surgeon, a medical oncologist, a radiation oncologist and a plastic surgeon – all working on their case and sharing ideas.
“Of course if they have strong preferences for retaining a breast and having radiation yes (or) no, those are really important decisions for a patient to think about,” Katz said.
“There are very strong reasons to engage women at the very highest level regarding those values and preferences.”
“The purpose (of the study) was not to say women shouldn’t be provided with these treatment options, but that the information really needs to be tailored better,” Livaudais, who is now at the University of California, San Francisco, told Reuters Health.
She recommended doctors ask each patient how much responsibility she feels comfortable taking going into treatment.
“Some patients prefer… for the information to be presented in simpler terms, or for the physician to recommend something to them,” Livaudais said.