"Our findings highlight an unmet need in patients for decisional support when they are going through breast cancer treatment," says lead study author Lauren P. Wallner, Ph.D., MPH, assistant professor of general medicine at the University of Michigan Medical School.
"But at this point, leveraging social media and online communication in clinical practice is not going to reach all patients. There are barriers that need to be considered," she adds.
Researchers surveyed 2,460 women newly diagnosed with breast cancer about their use of email, texting, social media and web-based support groups following their diagnosis. Women were identified through the Surveillance, Epidemiology and End Results database. The study appears in JAMA Oncology.
Overall, 41 percent of women reported some or frequent use of online communication. Texting and email were most common, with 35 percent of women using it. Twelve percent of women reported using Facebook, Twitter or other social media sites, and 12 percent used web-based support groups.
"Women reported separate reasons for using each of these modalities. Email and texting were primarily to let people know they had been diagnosed. They tended to use social media sites and web-based support groups to interact about treatment options and physician recommendations," Wallner says.
"Women also reported using all of these outlets to deal with the negative emotions and stress around their breast cancer diagnosis. They're using these communications to cope," she says.
Online communication was more common in younger women and those with more education. Use also varied by race, with 46 percent of white women and 43 percent of Asian women reporting frequent use, compared to 35 percent of black women and 33 percent of Latinas.
The researchers also found that women who frequently used online communication had more positive feelings about their treatment decision. They were more likely to report a deliberate decision and more likely to be highly satisfied with their decision.
Despite these benefits, the study authors urge caution.
"For some women, social media may be a helpful resource. But there are still questions to answer before we can rely on it as a routine part of patient care," Wallner says. "We don't know a lot about the type of information women are finding online. What are they sharing and what is the quality of that information? We need to understand that before we can really harness the potential of social media to better support patients through their cancer treatment and care."
Wallner is part of the Cancer Surveillance and Outcomes Research Team based at the University of Michigan and is a member of the university's Institute for Healthcare Policy and Innovation.
Wallner LP, Martinez KA, Li Y, et al.
Use of Online Communication by Patients With Newly Diagnosed Breast Cancer During the Treatment Decision Process.
JAMA Oncol. doi:10.1001/jamaoncol.2016.2070.