When Breast Cancer Patients Use Social Media, They May Be More Satisfied with Treatment Decisions

Women who engaged on social media after a breast cancer diagnosis expressed more deliberation about their treatment decisions and more satisfaction with the paths they chose, a new study finds.

Still, the researchers found significant barriers to social media for some women, particularly older women, those with less education and some minorities.

“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., M.P.H., assistant professor of general medicine at the University of Michigan Medical School and member of the U-M Comprehensive Cancer Center.

“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 says.

Researchers surveyed 2,460 women newly diagnosed with breast cancer about their use of email, texting, social media and web-based support groups after diagnosis. Women were identified through the Surveillance, Epidemiology and End Results database. The study appears in JAMA Oncology.

Using online communication to cope with breast cancer

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 with 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 decisions. They were more likely to report a deliberate decision and more likely to be highly satisfied with the 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.

In addition to Wallner, the study's authors include Kathryn A. Martinez, PhD, MPH; and IHPI members  Yun Li, PhD; Reshma Jagsi, MD, DPhil; Nancy K. Janz, PhD, MS; Steven J. Katz, MD, MPH; and Sarah T. Hawley, PhD, MPH.