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Patient Perspectives of Dabigatran: Analysis of Online Discussion Forums

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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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References

  1. Pew Research Center and California Healthcare Foundation. PEW Internet and American Life Project: health topics. Washington, DC. Published 1 February 2011. http://www.pewinternet.org/~/media//Files/Reports/2011/PIP_HealthTopics.pdf (Accessed 14 July 2012).

  2. Kim MH, et al. Estimation of total incremental health care costs in patients with atrial fibrillation in the United States. Circ Cardiovasc Qual Outcomes. 2011;4(3):313–20.

    Article  PubMed  Google Scholar 

  3. Hersi A, Wyse DG. Management of atrial fibrillation. Curr Probl Cardiol. 2005;30(4):175–233.

    Article  CAS  PubMed  Google Scholar 

  4. Hersi A, Wyse DG. Medical management of atrial fibrillation. Curr Cardiol Rep. 2006;8(5):323–9.

    Article  PubMed  Google Scholar 

  5. Dittus C, Ansell J. The evolution of oral anticoagulant therapy. Primary Care Clin Office Pract. 2013;40(1):109–34.

    Article  Google Scholar 

  6. Connolly SJ, et al. Dabigatran versus warfarin in patients with atrial fibrillation. N Engl J Med. 2009;361(12):1139–51.

    Article  CAS  PubMed  Google Scholar 

  7. Connolly SJ, et al. Newly identified events in the RE-LY trial. N Engl J Med. 2010;363(19):1875–6.

    Article  CAS  PubMed  Google Scholar 

  8. FDA drug safety communication: special storage and handling requirements must be followed for Pradaxa (dabigatran etexilate mesylate) capsules. Safety announcement. http://www.fda.gov/Drugs/DrugSafety/ucm248746.htm (Accessed 9 Sep 2012).

  9. Bauer KA. Dabigatran, ROCKET atrial fibrillation, and beyond: basic science, mechanisms of agents, monitoring, and reversal. Stroke. 2013;44:S38–40.

    Article  PubMed  Google Scholar 

  10. Green J, Thorogood N. Analysing qualitative data. In: Silverman D, editor. Qualitative methods for health research. 1st ed. London: Sage Publications; 2004. p. 173–200.

    Google Scholar 

  11. Gage BF. Validation of clinical classification schemes for predicting stroke: results from the National Registry of Atrial Fibrillation. JAMA. 2001;285:2864–70.

    Article  CAS  PubMed  Google Scholar 

  12. Fuster V. A report of the American College of ACC/AHA/ESC 2006 guidelines for the management of patients with Atrial Rhythm Association and the Heart Rhythm Society. Circulation. 2006;114:700–52.

    Article  Google Scholar 

  13. Miyares MA, David K. Newer oral anticoagulants: a review of laboratory monitoring options and reversal agents in the hemorrhagic patient. Am J Health Syst Pharm. 2012;69(17):1473–84.

    Article  CAS  PubMed  Google Scholar 

  14. Frank Peacock W, Gearhart MM, Mills RM. Emergency management of bleeding associated with old and new oral anticoagulants. Clin Cardiol. 2012;35:730–7. doi:10.1002/clc.22037.

    Google Scholar 

  15. US FDA. Label and approval history for PRADAXA, NDA no. 022512; 2010 [cited 20 Dec 2010]. http://www.accessdata.fda.gov/drugsatfda_docs/label/2010/022512s000lbl.pdf.

  16. Mahtani KR, et al. Reminder packaging for improving adherence to self-administered long-term medications. Cochrane Database Syst Rev. 2011;(9):CD005025.

  17. Nutescu E, Chuatrisorn I, Hellenbart E. Drug and dietary interactions of warfarin and novel oral anticoagulants: an update. J Throm Thrombolysis. 2011;31:326–43.

    Article  CAS  Google Scholar 

  18. Graham DJ, et al. Risk of acute myocardial infarction and sudden cardiac death in patients treated with cyclo-oxygenase 2 selective and non-selective non-steroidal anti-inflammatory drugs: nested case control study. Lancet. 2005;365(9458):475–81.

    Article  CAS  PubMed  Google Scholar 

  19. Hippisley-Cox J, Coupland C. Risk of myocardial infarction in patients taking cyclo-oxygenase-2 inhibitors or conventional non-steroidal anti-inflammatory drugs: population based nested case-control analysis. BMJ. 2005;331(7528):1310–6.

    Article  CAS  PubMed  Google Scholar 

  20. Ginsberg J, et al. Detecting influenza epidemics using search engine query data. Nature. 2008;457:1012–4.

    Article  Google Scholar 

  21. Eysenbach G. Infodemiology: tracking flu-related searches on the web for syndromic surveillance. AMIA Annu Symp Proc; 2006. p. 244–8 http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=17238340.86095.

  22. Hill S, et al. Natural supplements for H1N1 influenza: retrospective observational infodemiology study of information and search activity on the Internet. J Med Internet Res. 2011;13(2):e36.

    Article  PubMed Central  PubMed  Google Scholar 

  23. Yom-Tov E, Gabrilovich E. Postmarket drug surveillance without trial costs: discovery of adverse drug reactions through large-scale analysis of web search queries. J Med Internet Res. 2013;15(6):e124.

    Article  PubMed Central  PubMed  Google Scholar 

  24. White RW, et al. Web-scale pharmacovigilance: listening to signals from the crowd. J Am Med Inform Assoc. 2013;20(3):404–8.

    Article  PubMed  Google Scholar 

  25. Klemm P, et al. Online cancer support groups: a review of the research literature. Comput Nurs. 2003;21:136–42.

    Article  Google Scholar 

  26. Perron B. Online support for caregivers of people with a mental illness. Psychiatr Rehabil J. 2002;26:70–7.

    Article  PubMed  Google Scholar 

  27. Broom A. Virtually healthy: the impact of internet use on disease experience and the doctor-patient relationship. Qual Health Res. 2005;15:325–45.

    Article  PubMed  Google Scholar 

  28. Powell J, McCarthy N, Eysenbach G. Cross-sectional survey of users of internet depression communities. BMC Psychiatry. 2003;10:19.

    Article  Google Scholar 

  29. Mo PK, Coulson NS. Online support group use and psychological health for individuals living with HIV/AIDS. Patient Educ Couns. 2013 (Epub ahead of print).

  30. Pew Research Center and California Healthcare Foundation. PEW Internet and American Life Project: digital divide. Washington, DC. Published 13 April 2012. http://www.pewinternet.org/Reports/2012/Digital-differences.aspx (Accessed 14 July 2012).

  31. Kirley K, et al. National trends in oral anticoagulant use in the United States, 2007 to 2011. Circ Cardiovasc Qual Outcomes. 2012;5:1–13.

    Article  Google Scholar 

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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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Authors and Affiliations

  1. Comprehensive Access and Delivery Research and Evaluation (CADRE) Center, Iowa City VA Health Care System, Iowa City, IA, USA

    Mary S. Vaughan Sarrazin, Peter Cram & Heather Schacht Reisinger

  2. Department of Internal Medicine, University of Iowa Carver College of Medicine, 200 Hawkins Drive, C44-J GH, Iowa City, IA, USA

    Mary S. Vaughan Sarrazin, Peter Cram, Alexandur Mazur, Melissa Ward & Heather Schacht Reisinger

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  1. Mary S. Vaughan Sarrazin
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  2. Peter Cram
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  4. Melissa Ward
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  5. Heather Schacht Reisinger
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Corresponding author

Correspondence to Mary S. Vaughan Sarrazin.

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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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