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Breast Cancer Patients Frequently Discuss Drug Side Effects, Discontinuation of Therapy Online

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Nearly half of women taking AIs do not fulfill their recommended course of treatment

In an unprecedented study, researchers examined Internet message boards containing patient discussions pertaining to drug side effects. Study results showed that, in these forums, breast cancer survivors taking aromatase inhibitors (AIs) often described difficult side effects from the drugs, and that patients were likely to report discontinuing the treatment or changing to another drug within the same class.

“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 Jun J. Mao, MD, MSCE, the study’s lead author and an assistant professor of Family Medicine and Community Health, who directs the Integrative Oncology program in University of Pennsylvania’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.”

Although AIs are the most commonly used medications to prevent recurrence among postmenopausal women with hormone receptor–positive breast cancer, previous studies have shown that nearly half of women taking AIs do not fulfill their recommended course of treatment.

For the study, researchers from the Perelman School of Medicine at the University of Pennsylvania analyzed 25,256 message board posts related to AIs. The message boards were from 12 popular Web sites, including breastcancer.org, Susan G. Komen for the Cure, Oprah.com, and WebMD. Researchers discovered that more than 18% of authors mentioned at least 1 side effect. The most commonly reported side effect, joint and musculoskeletal pain, was mentioned by about a quarter of those who wrote about side effects.

Among patients who wrote on the message boards regarding taking AIs:

  • 12.8% discussed discontinuing the drugs with no plans to take another AI
  • 28% commented on switching to a different type of AI

Researchers further analyzed 1000 randomly selected posts and found that 27% of patients urged others to seek help from their own physicians. However, only 8% explicitly advised others to remain on AI therapy.

Messages offering advice often included reminders of the multiple types of AIs that women can try if they have problems. Patients advised others of the importance of taking the drugs for a few months before making a decision regarding switching drugs or ceasing therapy.

“On the internet, patients come together from a broad swath of geographic areas, from many racial and socioeconomic backgrounds and from treatment in different types of clinical settings,” says senior author John Holmes, PhD, associate professor of Medical Informatics in Epidemiology. “This range of perspectives…may provide valuable data to guide health care providers seeking new ways to engage with patients and help them make decisions that will improve their health and provide them with a good quality of life.”

The study was published recently in the journal Pharmacoepidemiology and Drug Safety.

Source: Penn Medicine.