Abstract
Background
In 2010 the US FDA approved dabigatran, the first new anticoagulant for stroke prevention in non-valvular atrial fibrillation (AF) since 1954. To date there is little data that reflects the experiences and perceptions of real-world patients with dabigatran. The abundance of Internet-based discussion forums and support groups related to AF or anticoagulation may provide a low-cost resource for assessing patient experiences.
Objective
The aim of this study was to determine patient experiences and perceptions regarding dabigatran through qualitative thematic content analysis of comments posted on publicly accessible virtual discussion forums and Internet support groups.
Measurements
Comments posted between January 2011 and September 2012 were downloaded from websites focusing on support of patients with AF or on anticoagulation therapy. Comments were analyzed for thematic content.
Results
Five broad thematic categories emerged from the posted comments: general concerns about safety and efficacy, questions about indications and contraindications, questions about proper use and storage, questions about diet and drug restrictions, and experiences with perceived side effects. Our data revealed that a primary concern for patients taking dabigatran is the lack of antidote to reverse the effects of dabigatran if bleeding occurs. Several questions pertaining to the use of dabigatran with other medications or medical conditions were noted, and multiple patients expressed confusion about instructions for using dabigatran before and after medical procedures. An unexpected finding included several criticisms of the medication packaging, which many patients found inconvenient or difficult to open. Finally, several perceived side effects were noted, including some not reported in clinical trials.
Conclusions
Online communities may provide information about topics that are a concern to patients and that may not be discernible in clinical trials, such as medication side effects, proper use, and safety. Our data also highlighted potential topics that may not be a priority to researchers but are nevertheless important to patients (e.g. medication convenience or packaging). Despite the growing use of online health-related communities, very little research makes use of this low-cost resource for identifying patient interests regarding therapeutic treatments to guide patient-oriented research.
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Acknowledgments
This work was supported by a Mentored Career Enhancement Award in Patient Centered Outcomes Research (PCOR) for Mid-Career and Senior Investigators (K18) provided to Dr. Vaughan Sarrazin by the Agency for Healthcare Research and Quality (AHRQ), and by the Health Services Research and Development Service (HSR&D) of the Department of Veterans Affairs. Dr. Cram is supported by a K24 Award from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) at the National Institutes of Health (NIH) [AR062133]. The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.
Conflicts of interest
All authors have no conflicts of interest to report.
Author contributions
Study concept and design were primarily the work of Mary Vaughan Sarrazin and Heather Schacht Reisinger, with assistance from the other authors. Mary Vaughan Sarrazin and Melissa Ward performed data collection and analysis, with assistance from Heather Schacht Reisinger. Writing of the manuscript was shared by Mary Vaughan Sarrazin, Heather Schacht Reisinger, Peter Cram and Alexandur Mazur. Revision of the manuscript was shared by Mary Vaughan Sarrazin, Heather Schacht Reisinger, Peter Cram and Alexandur Mazur. Mary Vaughan Sarrazin is the guarantor for the overall content.
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Vaughan Sarrazin, M.S., Cram, P., Mazur, A. et al. Patient Perspectives of Dabigatran: Analysis of Online Discussion Forums. Patient 7, 47–54 (2014). https://doi.org/10.1007/s40271-013-0027-y
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DOI: https://doi.org/10.1007/s40271-013-0027-y