Online discussion of drug side effects and discontinuation among breast cancer survivors

Abstract

PURPOSE While patients often use the internet as a medium to search for and exchange health-related information, little is known about the extent to which patients use social media to discuss side effects related to medications. We aim to understand the frequency and content of side effects and associated adherence behaviors discussed by breast cancer patients related to using aromatase inhibitors (AIs), with particular emphasis on AI-related arthralgia. METHODS We performed a mixed methods study to examine content related to AI associated side effects posted by individuals on 12 message boards between 2002 and 2010. We quantitatively defined the frequency and association between side effects and AIs and identified common themes using content analysis. One thousand randomly selected messages related to arthralgia were coded by two independent raters. RESULTS Among 25,256 posts related to AIs, 4,589 (18.2%) mentioned at least one side effect. Top-cited side effects on message boards related to AIs were joint/musculoskeletal pain (N=5,093), hot flashes (1,498), osteoporosis (719), and weight gain (429). Among the authors posting messages who self-reported AI use, 12.8% mentioned discontinuing AIs, while another 28.1% mentioned switching AIs. Although patients often cited severe joint pain as the reason for discontinuing AIs, many also offered support and advice for coping with AI-associated arthralgia. CONCLUSIONS Online discussion of AI-related side effects was common and often related to drug switching and discontinuation. Physicians should be aware of these discussions and guide patients to effectively manage side effects of drugs and promote optimal adherence.

How often people google for vaccination: Qualitative and quantitative insights from a systematic search of the web-based activities using Google Trends

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Validation of QuickDASH Outcome Measure in Breast Cancer Survivors for Upper Extremity Disability

“…While the most commonly used validated outcome measures in the general population for upper extremity assessment are the DASH scale (disability of shoulder, arm and hand), PRWE questionnaire (patient-rated wrist evaluation), Brigham and Women's carpal tunnel questionnaire, Gartland and Werley scale, it is the DASH scale that was deemed to be the most effective instrument for evaluating patients with disorders involving multiple joints of the upper limb 10 247. This is particularly relevant for breast cancer survivors on AI“s who frequently have pain in multiple upper extremity joints 15, 16 .Other functional assessment outcome measures that have been utilized in breast cancer patients include Pennsylvania Shoulder Score, FACT-B, and SF-36, but are limited in use because of lengthiness 17, 18 . Therefore, the quickDASH is an easy to administer assessment tool for breast cancer patients that experience pathology in any upper extremity joint.…”

Detection of Cases of Noncompliance to Drug Treatment in Patient Forum Posts: Topic Model Approach (Preprint)

“…Patients often use online social media to discuss drug side effects and adherence to therapies. Mao et al [14] studied the messages from breast cancer patients treated by aromatase inhibitors. 18.2% of the posts mentioned at least one adverse effect and almost 13% of the individuals mentioned discontinuing aromatase inhibitors.…”

“…The meta-analysis published by Taggart et al [11] identified two studies on HIV populations that demonstrated a link between the use of social media and the improvement of compliance to treatment among users. Moreover, Mao et al [14] showed that breast cancer patients offer practical strategies to deal with drug side effects and provide support to each other. For example, 28% of the posts mentioned some method for addressing their aromatase inhibitor-related arthralgia, including exercising and pharmaceuticals, whether prescribed or over the counter.…”