Penn Study of Breast Cancer Message Boards Finds Frequent Discussion of Drug Side Effects

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Media Contact:Holly Auer | holly.auer@uphs.upenn.edu | 215-349-5659January 15, 2013

PHILADELPHIA — In the first study to examine discussion of drug side effects on Internet message boards, researchers from the Perelman School of Medicine at the University of Pennsylvania found that breast cancer survivors taking the commonly prescribed adjuvant therapy known as aromatase inhibitors (AIs) often detailed in these forums troublesome symptoms resulting from the drugs, and they were apt to report discontinuing the treatment or switching to a different drug in the same class. The findings are published online this week in the journal Pharmacoepidemiology and Drug Safety. With 2.5 million breast cancer survivors living in the United States today – the largest group of cancer survivors – researchers say the findings have broad implications for physician communication with patients about these issues to help to promote proper adherence and inform patient-to-patient discussion online.

“Both the availability and anonymity provided by message boards – and increasingly, other forms of social media such as Twitter and Facebook – offer patients a place to voice concerns and connect with an audience of peers in similar situations. This type of social support can be very valuable to patients who are struggling with side effects like joint pain, and may serve as a forum where they will be encouraged to seek help from their physician,” says the study’s lead author, Jun J. Mao, MD, MSCE, an assistant professor of Family Medicine and Community Health, who directs the Integrative Oncology program in Penn’s Abramson Cancer Center. “However, our findings indicate that message board discussion of the side effects of AIs may also have negative consequences for adherence to therapy, or make patients reluctant to begin taking these drugs at all.”

AIs are the most commonly used medications to prevent recurrence among post-menopausal women with hormone receptor positive breast cancer, leading to an annual revenue of over $3.5 billion worldwide. Previous studies have shown that nearly half of women taking AIs do not complete their recommended course of treatment, and that those who stop taking the drugs or don’t take them as prescribed have a higher chance of dying of both breast cancer and other causes.

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