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

• Published in: Pharmacoepidemiology and drug safety 2013-03, Vol.22 (3), p.256-262
• Main Authors: Mao, Jun J., Chung, Annie, Benton, Adrian, Hill, Shawndra, Ungar, Lyle, Leonard, Charles E., Hennessy, Sean, Holmes, John H.
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; adherence; adverse effects; Antineoplastic Agents, Hormonal - adverse effects; aromatase inhibitor; Aromatase Inhibitors - adverse effects; Arthralgia - chemically induced; Arthralgia - psychology; Biological and medical sciences; Breast cancer; breast neoplasm; Breast Neoplasms - drug therapy; Cancer therapies; Drug Substitution; Drug toxicity and drugs side effects treatment; Female; Health Communication; Health Information Systems; Health Knowledge, Attitudes, Practice; Hot Flashes - chemically induced; Hot Flashes - psychology; Humans; Internet; joint pain; Medical sciences; Medication Adherence; musculoskeletal; online; Osteoporosis - chemically induced; Osteoporosis - psychology; pharmacoepidemiology; Pharmacology. Drug treatments; Quality of Life; Side effects; Social Media; Social networks; Survivors - psychology; Toxicity: osteoarticular system; Weight Gain
• ISSN: 1053-8569; 1099-1557
• DOI: 10.1002/pds.3365

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, 4589 (18.2%) mentioned at least one side effect. Top‐cited side effects on message boards related to AIs were joint/musculoskeletal pain (N = 5093), hot flashes (1498), 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. Conclusion 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. Copyright © 2013 John Wiley & Sons, Ltd.