Patients with cancer can get all sorts of information about what their diagnoses might mean and what their treatment options are online-via email, social media, and web-based support groups. But whether or not such communication helps patients make better decisions, or leaves patients happier with the decisions they do make, is a debated question.
New research published online ahead of print in JAMA Oncology offers a few insights on the topic.
"Our study suggests that there continues to be an unmet need in patients for more decision-making support," explained the study's lead author Lauren Wallner, PhD, MPH, Assistant Professor of General Medicine at the University of Michigan Medical School.
Wallner and her colleagues looked at data from 2,460 women who had had a diagnosis of breast cancer who answered survey questions for the Surveillance, Epidemiology, and End Results registries of Georgia and Los Angeles County from July 2013 through September 2014 about their online communication use and their own appraisal of their treatment decision-making (doi:10.1001/jamaoncol.2016.2070). The data shows that the women who were more frequent users of online communication-including social media, online support groups, email, and text messages-more positively appraised their decision-making about their cancer treatment compared with the women who did not report using methods of online communication.
Wallner told Oncology Times more about the research and how it might affect how oncologists help their patients make decisions about their treatment options.
1 Why did you and your colleagues decide to look at social media use among patients with breast cancer and how can practicing clinicians use findings like these?
"The use of online communication, particularly social media, has rapidly grown among cancer patients and survivors in recent years-particularly in breast cancer. Yet we knew very little about what types of patients are using it, why they are using it, and whether or not using it results in improved outcomes.
"We, therefore, asked women about their use and reasons for use to better understand whether social media and other online communication tools could be used to communicate and support patients through the treatment decision-making process and [their] ongoing care.
"While this was a large and diverse population-based sample of newly diagnosed patients with breast cancer in Los Angeles and Georgia, it is possible that these results may not be generalizable to patients in different geographic areas. Also, it is possible that use among patients with different types of cancer may differ."
2 Were you surprised by the findings? What was most significant?
"I was surprised that the use of online communication was not higher in this population, as breast cancer patients are a very engaged and active on social media sites like Twitter and Facebook. But in our large and diverse population, only 41 percent of women reported some frequent use of online communication and only 12 percent of them were using social media sites.
"While use of social media and other online tools in the context of cancer has been increasing in the past decade, and past studies have shown that, ours is the first (to my knowledge) to assess whether use of these online communication tools was associated with more positive appraisals of cancer treatment decision-making.
"Our study suggests that women newly diagnosed with breast cancer who frequently used online communication-such as email and social media-were more likely to deliberate longer about their breast cancer treatment decision and be more satisfied with their decision."
3 In the paper, you and your coauthors explain: "The presence of variation across age, race and education reinforces that barriers exist to incorporating these modalities broadly across patients with cancer. Additional research is needed before these modalities can be leveraged to improve patient care experiences." Could you elaborate on where your research showed these barriers exist?
"We found strong gradients in online communication use across age, race, and education. Older women, black and Latina women, and those with less education were less likely to be using these forms of online communication.
"These barriers in use need to be considered [to be able] to leverage social media and other forms of online communication to support women through their treatment decision and ongoing breast cancer care. At least in our sample, using these forms of communication would not currently reach all patients who need support."