Going Online Ups Patients' Satisfaction About Tx Decisions

Kristin Jenkins

July 28, 2016

Women with newly diagnosed breast cancer say turning to the Internet and social media to get information about their treatment decisions helps them feel good about their choice of therapy, a study now shows.

Analysis of a diverse, population-based sample of 2460 women who were newly diagnosed with breast cancer reveals that 41% were emailing, texting, going on Twitter and Facebook, and turning to blogs and Web-based support groups to exchange information about treatment options and to get help dealing with negative emotions.

Women who most frequently used the Internet and social media reported a high degree of satisfaction with physician recommendations and their treatment choices in comparison with women who never went online.

Those who used online communication the most also took more time to consider their treatment decision (adjusted odds ratio, 1.67) and were more satisfied once the decision was made (adjusted odds ratio, 1.45).

The results were published online July 28 in JAMA Oncology.

"Findings from this study suggest that frequent use of online communication may be associated with more positive appraisal of treatment decision-making," say lead study author Lauren P. Wallner, PhD, MPH, assistant professor of general medicine at the University of Michigan Medical School, Ann Arbor, and colleagues in their report.

The average age of women in the analysis was almost 62 years; 60% were white; and 73% had at least some college education.

The researchers were quite surprised to learn that patients' use of the Internet and other online resources was not as ubiquitous as physicians tend to think, Dr Wallner said in an interview. Not only was the use of online communication limited, but most of it consisted of emailing and/or texting (35%), and there was less use of social media (12%) and Web-based support groups (12%).

"Based on our findings, overall use of online tools, particularly social media, is lower than we expected, even though the breast cancer population has a strong online presence, including their own Twitter hashtag," she told Medscape Medical News. The hashtag is #bcsm for "breast cancer social media."

For the analysis, researchers looked at 3631 women aged 20 to 79 years with newly diagnosed breast cancer (stages I-III), as reported to the Surveillance, Epidemiology, and End Results (SEER) registries of Georgia and Los Angeles County from July 2013 through September 2014.

At a mean period of 6 months following diagnosis, 2578 (71%) women responded to a survey about their treatment experience as part of the iCanCare Study. Of these, complete information was available for 2460 women concerning their use of online communication and satisfaction about their treatment decision.

Not surprisingly, factors bearing on the use of online resources included age, race, and education. Younger women and those with more education were most likely to use the Web and social media (P < .001).

The study showed that 46% of white women surveyed said they used online resources regularly, as did 43% of Asian-American women. By comparison, 35% of African-American women and 33% of Hispanic women reported use of online resources.

Because patients have "an unmet need for decisional support," more research is needed before these online resources can be leveraged to improve the patient care experience for all patients, Dr Wallner noted.

The study was not powered to analyze the quality of online information the patients gathered and exchanged, something which Dr Wallner finds "concerning."

"We know a lot less about the details of this information exchange than in clinical practice," she said. "The jury is still out on this."

In Dr Wallner's opinion, providing patients with resources that they can trust (including addresses of reputable websites) and engaging in shared decision-making that aligns with a patient's preferences are very much the responsibility of clinicians and staff. "This is not to say that patients can't find other sources of support," she notes.

When it makes sense clinically, she suggests letting patients have more time to consider treatment options before making a decision.

It can be important to let patients think it through, consult others, and consider the pros and cons. Dr Lauren Wallner

"A lot of patients [with newly diagnosed breast cancer] are choosing between treatments that have similar outcomes, so it comes down to personal preference," she points out. "It can be important to let patients think it through, consult others, and consider the pros and cons."

Looking ahead, the iCanCare study will resurvey these women 4 years after diagnosis. The goal is to learn how Internet use changes over time as these women move along the "breast cancer continuum," said Dr Wallner. "We want to know if some are using it more and, if so, what type of information are they looking for."

With rapid adoption of electronic medical records and patient portals, physicians now have an opportunity to engage with patients online in a whole new way. Dr Wallner predicts that email communication may become more relevant for clinicians and patients.

"It's still not clear whether this improves care, but there's also no evidence that it hurts. And it's another opportunity for patients to engage with clinic staff and the physician directly," she commented.

This research was supported by the National Cancer Institute of the National Institutes of Health. Dr Wallner has received prior research grant funding from GlaxoSmithKline, which was not related to this study. Her coauthors have disclosed no relevant financial relationships.

JAMA Oncol. Published online July 28, 2016. Full text


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