Undesirable effects related to oral antineoplastic drugs: Comparison between patients' Internet narratives and a national pharmacovigilance database

Abstract

Background: The Internet is changing the way people learn about health and illness. Over the previous decade, the oral antineoplastic (OAN) agents have changed patient management allowing more ambulatory care. In this regard, websites could be an interesting source of data about OAN-induced adverse events (AEs). Objective: The aim of the study was to describe the characteristics of AEs, as reported on websites by patients exposed to OAN agents, and to compare these to those recorded in the French pharmacovigilance database (FPVD). Methods: We performed a retrospective study to collect AEs reported by patients in five of the best-known website forums in France over 1 year (2011). For each report, we recorded demographic data, cancer type, drug involved and AEs. The same analysis was done in the FPVD for OAN-induced adverse drug reactions (ADRs). Results: A total of 202 AEs were identified in website posts and 1,448 ADRs were found in the FPVD. The most cited drugs in websites were protein kinase inhibitors (n = 88, 43.5 %) and hormone antagonists (n = 61, 30.2 %). More musculoskeletal disorder reports were found in the patient websites compared with the FPVD (16.34 vs. 4.70 %, p < 0.001). As for skin disorders, we collected fewer reports in the patient website forums than in the FPVD (13.37 vs. 22.17 %, p = 0.004). AEs reported in the patient websites were less serious (n = 10, 4.95 %) than ADRs recorded in the FPVD (n = 999, 68.99 %) (p < 0.001). Conclusions: AEs reported in the website forums are considered by patients to be relevant enough to be shared. Data from patient websites could be used as a source of data to detect AEs alongside conventional pharmacovigilance. © 2014 Springer International Publishing.