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Breast Cancer Message Board study finds frequent discussion of drug side effects, stopping therapy
Date:1/16/2013

who reported struggling with side effects spoke of a shift in their identity since being diagnosed with cancer, coupled with a profound fear of discontinuing the therapy: "I hurt, ache, swell, pain, shuffle, have significant join pain, have cognitive issues, and feel like I'm 80 when I'm mid-50's. But I'm also so afraid of the breast cancer that I shuffle alongside of everyone, like you do." On the other end of the spectrum, some women described feeling that the benefits of the therapy outweighed the risks: "The way I look at it, at 53 years old, I was likely to get arthritis anyway, and any discomfort as a result of treatment is well worth prolonging my life." Advice-giving messages often included sentiments of hope, including reminders that there are multiple types of AIs that women can try if they have problems, and they underscored the importance of taking the drugs for a few months before making a decision about switching or discontinuing the therapy.

Mao and senior author John Holmes, PhD, associate professor of Medical Informatics in Epidemiology, suggest that their findings reveal that mining social media discussions about health issues may provide novel insights about patient perceptions of drug side effects and their potential impact on adherence to recommended therapies.

"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," Holmes says. "This range of perspectives would be difficult to capture in a typical clinical trial or survey, and 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."


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Contact: Holly Auer
holly.auer@uphs.upenn.edu
215-349-5659
University of Pennsylvania School of Medicine
Source:Eurekalert

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