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An enlightening new study published in The Journal of Cancer Survivorship shines a light on how breast cancer patients really feel about endocrine therapy (ET).

The research is important, not only because it takes into account the lived experience of treatment for women living with breast cancer, but also because the lead researcher, Dr. Deanna Attai, got the idea from social media—where real women were talking openly about their frustrations. After observing their discussion, she recruited these women to help design questions for the study.

Dr. Attai frequently observed patients with breast cancer posting on social media about their frustrations talking to their oncologists about the downside of taking endocrine therapy: Women were told that the common symptoms of weight gain, joint pain, loss of libido, vaginal dryness or impotence were simply the price paid for the highly effective treatment.

“I saw multiple comments along the lines of ‘My oncologist is great, but when it comes to endocrine therapy, every time I try to talk about side effects, the conversation just stops,’” Dr. Attai, an assistant clinical professor in the department of surgery at UCLA Health at the David Geffen School of Medicine, said in an interview.

Nine patients, who were active in breast cancer social media communities, were asked to create a survey for hormone receptor–positive patients about their experiences with endocrine therapy and communication with their health care providers. “Who’s better qualified to design the questions than the people who are living with the side effects?” said Dr. Attai, adding, “that conventional quality-of-life studies usually don’t measure what’s meaningful to patients.”

Patients with a history of HR+ breast cancer who had received a recommendation to take ET were eligible to participate in the anonymous, online survey.

Researchers pointed out that despite the known efficacy of ET:

  • Up to 30% of patients with invasive HR+ breast cancer who are prescribed ET never initiate therapy.
  • 18% to 73% of patients who initiate ET do not complete the prescribed course of treatment.
  • Early discontinuation of therapy is associated with increased recurrence and breast cancer–specific mortality rates, as well as higher medical costs. Therefore, it is crucial to understand barriers to ET adherence.

The survey generated more than 2,400 responses and found that 91% experienced side effects, which prompted about one-third of patients to discontinue therapy. In addition, 31.5% of respondents reported that they felt their concerns were “dismissed or minimized” in discussions with their cancer care team.

Dr. Attai’s study references another survey of oncology patients, whereby respondents reported being more likely to stop therapy if they experienced unexpected side effects, with approximately one-third saying they wished they had known more about treatment toxicities.

This research demonstrates the importance of continued and serial communication between the medical team and the patient. It captured the attention of the Bridge team because it reaches outside the box in terms of seeking patient input (social media); takes into account the real experiences of women with breast cancer; and highlights the importance of creating effective communication and information resources to both educate practitioners and help patients make informed decisions about treatments.

Reach out today: We’d love to talk about how our solutions can help build on your communications to drive engagement and dissemination of information that will improve therapy compliance and lead to better patient journeys.