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Undesirable effects related to oral antineoplastic drugs: comparison between patients' internet narratives and a
Arnaud Pages1, Emmanuelle Bondon-Guitton, Jean Louis Montastruc
1Service de Pharmacologie Médicale et Clinique, Centre Midi-Pyrénées de PharmacoVigilance, de Pharmacoépidémiologie et d'Informations sur le Médicament, INSERM U1027, Faculté de Médecine, CHU de Toulouse, Université de Toulouse, 37 Allées Jules Guesde, 31000, Toulouse, France.
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.
Insights
Patient websites offer valuable insights into oral antineoplastic agent adverse events (AEs). These online reports, though less serious, complement traditional pharmacovigilance data for detecting AEs.
Area of Science:
- Pharmacovigilance
- Digital Health
- Oncology
Background:
- The internet is transforming health information access.
- Oral antineoplastic (OAN) agents enable increased ambulatory cancer care.
- Websites can serve as a data source for OAN-related adverse events (AEs).
Purpose of the Study:
- To characterize AEs reported by patients on websites for OAN agents.
- To compare these website-reported AEs with data from the French pharmacovigilance database (FPVD).
Main Methods:
- Retrospective study analyzing patient-reported AEs from French website forums (2011).
- Data collected included demographics, cancer type, drug, and AEs.
- Comparison with OAN-induced adverse drug reactions (ADRs) in the FPVD.
Main Results:
- 202 AEs from websites vs. 1,448 ADRs in FPVD.
- Most cited drugs: protein kinase inhibitors and hormone antagonists.
- Websites showed more musculoskeletal disorders (16.34% vs. 4.70%) and fewer skin disorders (13.37% vs. 22.17%) than FPVD.
- Website AEs were less serious (4.95%) compared to FPVD ADRs (68.99%).
Conclusions:
- Patient-shared AEs on websites are deemed relevant.
- Website data can augment conventional pharmacovigilance for AE detection.
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