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Patient Perspectives of Dabigatran: Analysis of Online Discussion Forums
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...
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Published in: | The patient : patient-centered outcomes research 2014, Vol.7 (1), p.47-54 |
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description | 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. |
doi_str_mv | 10.1007/s40271-013-0027-y |
format | article |
fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_1501372677</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>1501372677</sourcerecordid><originalsourceid>FETCH-LOGICAL-c415t-a70398328c8f49ec46d4013d1335616d7f24b35ad5be38f65649edee5e7de27a3</originalsourceid><addsrcrecordid>eNp1kF9LwzAUxYMobk4_gC9S8MWXav40SeebbM4Jg-1Bn0Pa3o6MLp1JK_Tbm9k5RPDpXu793ZOTg9A1wfcEY_ngE0wliTFhMQ5d3J2gISEyjYkQ5PTYczZAF95vMBZhIc7RgCaYYYnFEM1XujFgm2gFzu8gb8wn-Kguo6nOzFo3TtvH6MnqqvPme760lbEQTY3PW-9NbaNZ7dqtv0Rnpa48XB3qCL3Pnt8m83ixfHmdPC3iPCG8ibXEbJwymuZpmYwhT0SRBP8FYYwHd4UsaZIxrgueAUtLwUWgCgAOsgAqNRuhu1535-qPFnyjtsEKVJW2ULdeER7kJBVSBvT2D7qpWxf-sqd4SE4yQgNFeip3tfcOSrVzZqtdpwhW-5hVH7MKumofs-rCzc1Buc22UBwvfnINAO0BH1Z2De7X0_-qfgGEK4br</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>1552717312</pqid></control><display><type>article</type><title>Patient Perspectives of Dabigatran: Analysis of Online Discussion Forums</title><source>Springer Link</source><creator>Vaughan Sarrazin, Mary S. ; Cram, Peter ; Mazur, Alexandur ; Ward, Melissa ; Reisinger, Heather Schacht</creator><creatorcontrib>Vaughan Sarrazin, Mary S. ; Cram, Peter ; Mazur, Alexandur ; Ward, Melissa ; Reisinger, Heather Schacht</creatorcontrib><description>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.</description><identifier>ISSN: 1178-1653</identifier><identifier>EISSN: 1178-1661</identifier><identifier>DOI: 10.1007/s40271-013-0027-y</identifier><identifier>PMID: 24030706</identifier><language>eng</language><publisher>Cham: Springer International Publishing</publisher><subject><![CDATA[Anticoagulants ; Benzimidazoles - administration & dosage ; Benzimidazoles - adverse effects ; Benzimidazoles - therapeutic use ; beta-Alanine - administration & dosage ; beta-Alanine - adverse effects ; beta-Alanine - analogs & derivatives ; beta-Alanine - therapeutic use ; Consumer Health Information - methods ; Content analysis ; Dabigatran ; Drug dosages ; Drug Interactions ; Fibrinolytic Agents - administration & dosage ; Fibrinolytic Agents - adverse effects ; Fibrinolytic Agents - therapeutic use ; Food-Drug Interactions ; Health Administration ; Health Economics ; Humans ; Internet resources ; Medicine ; Medicine & Public Health ; Original Research Article ; Patient Safety ; Patients ; Perception ; Pharmacoeconomics and Health Outcomes ; Population ; Public Health ; Qualitative research ; Quality of Life Research ; R&D ; Research & development ; Social Media ; Stakeholders ; Stroke ; Web sites]]></subject><ispartof>The patient : patient-centered outcomes research, 2014, Vol.7 (1), p.47-54</ispartof><rights>Springer International Publishing Switzerland 2013</rights><rights>Copyright Wolters Kluwer Health Adis International Mar 2014</rights><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c415t-a70398328c8f49ec46d4013d1335616d7f24b35ad5be38f65649edee5e7de27a3</citedby><cites>FETCH-LOGICAL-c415t-a70398328c8f49ec46d4013d1335616d7f24b35ad5be38f65649edee5e7de27a3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,780,784,27924,27925</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/24030706$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Vaughan Sarrazin, Mary S.</creatorcontrib><creatorcontrib>Cram, Peter</creatorcontrib><creatorcontrib>Mazur, Alexandur</creatorcontrib><creatorcontrib>Ward, Melissa</creatorcontrib><creatorcontrib>Reisinger, Heather Schacht</creatorcontrib><title>Patient Perspectives of Dabigatran: Analysis of Online Discussion Forums</title><title>The patient : patient-centered outcomes research</title><addtitle>Patient</addtitle><addtitle>Patient</addtitle><description>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.</description><subject>Anticoagulants</subject><subject>Benzimidazoles - administration & dosage</subject><subject>Benzimidazoles - adverse effects</subject><subject>Benzimidazoles - therapeutic use</subject><subject>beta-Alanine - administration & dosage</subject><subject>beta-Alanine - adverse effects</subject><subject>beta-Alanine - analogs & derivatives</subject><subject>beta-Alanine - therapeutic use</subject><subject>Consumer Health Information - methods</subject><subject>Content analysis</subject><subject>Dabigatran</subject><subject>Drug dosages</subject><subject>Drug Interactions</subject><subject>Fibrinolytic Agents - administration & dosage</subject><subject>Fibrinolytic Agents - adverse effects</subject><subject>Fibrinolytic Agents - therapeutic use</subject><subject>Food-Drug Interactions</subject><subject>Health Administration</subject><subject>Health Economics</subject><subject>Humans</subject><subject>Internet resources</subject><subject>Medicine</subject><subject>Medicine & Public Health</subject><subject>Original Research Article</subject><subject>Patient Safety</subject><subject>Patients</subject><subject>Perception</subject><subject>Pharmacoeconomics and Health Outcomes</subject><subject>Population</subject><subject>Public Health</subject><subject>Qualitative research</subject><subject>Quality of Life Research</subject><subject>R&D</subject><subject>Research & development</subject><subject>Social Media</subject><subject>Stakeholders</subject><subject>Stroke</subject><subject>Web sites</subject><issn>1178-1653</issn><issn>1178-1661</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2014</creationdate><recordtype>article</recordtype><recordid>eNp1kF9LwzAUxYMobk4_gC9S8MWXav40SeebbM4Jg-1Bn0Pa3o6MLp1JK_Tbm9k5RPDpXu793ZOTg9A1wfcEY_ngE0wliTFhMQ5d3J2gISEyjYkQ5PTYczZAF95vMBZhIc7RgCaYYYnFEM1XujFgm2gFzu8gb8wn-Kguo6nOzFo3TtvH6MnqqvPme760lbEQTY3PW-9NbaNZ7dqtv0Rnpa48XB3qCL3Pnt8m83ixfHmdPC3iPCG8ibXEbJwymuZpmYwhT0SRBP8FYYwHd4UsaZIxrgueAUtLwUWgCgAOsgAqNRuhu1535-qPFnyjtsEKVJW2ULdeER7kJBVSBvT2D7qpWxf-sqd4SE4yQgNFeip3tfcOSrVzZqtdpwhW-5hVH7MKumofs-rCzc1Buc22UBwvfnINAO0BH1Z2De7X0_-qfgGEK4br</recordid><startdate>2014</startdate><enddate>2014</enddate><creator>Vaughan Sarrazin, Mary S.</creator><creator>Cram, Peter</creator><creator>Mazur, Alexandur</creator><creator>Ward, Melissa</creator><creator>Reisinger, Heather Schacht</creator><general>Springer International Publishing</general><general>Springer Nature B.V</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>4T-</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8C1</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>K9-</scope><scope>K9.</scope><scope>KB0</scope><scope>M0R</scope><scope>M0S</scope><scope>M1P</scope><scope>NAPCQ</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>7X8</scope></search><sort><creationdate>2014</creationdate><title>Patient Perspectives of Dabigatran: Analysis of Online Discussion Forums</title><author>Vaughan Sarrazin, Mary S. ; Cram, Peter ; Mazur, Alexandur ; Ward, Melissa ; Reisinger, Heather Schacht</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c415t-a70398328c8f49ec46d4013d1335616d7f24b35ad5be38f65649edee5e7de27a3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2014</creationdate><topic>Anticoagulants</topic><topic>Benzimidazoles - administration & dosage</topic><topic>Benzimidazoles - adverse effects</topic><topic>Benzimidazoles - therapeutic use</topic><topic>beta-Alanine - administration & dosage</topic><topic>beta-Alanine - adverse effects</topic><topic>beta-Alanine - analogs & derivatives</topic><topic>beta-Alanine - therapeutic use</topic><topic>Consumer Health Information - methods</topic><topic>Content analysis</topic><topic>Dabigatran</topic><topic>Drug dosages</topic><topic>Drug Interactions</topic><topic>Fibrinolytic Agents - administration & dosage</topic><topic>Fibrinolytic Agents - adverse effects</topic><topic>Fibrinolytic Agents - therapeutic use</topic><topic>Food-Drug Interactions</topic><topic>Health Administration</topic><topic>Health Economics</topic><topic>Humans</topic><topic>Internet resources</topic><topic>Medicine</topic><topic>Medicine & Public Health</topic><topic>Original Research Article</topic><topic>Patient Safety</topic><topic>Patients</topic><topic>Perception</topic><topic>Pharmacoeconomics and Health Outcomes</topic><topic>Population</topic><topic>Public Health</topic><topic>Qualitative research</topic><topic>Quality of Life Research</topic><topic>R&D</topic><topic>Research & development</topic><topic>Social Media</topic><topic>Stakeholders</topic><topic>Stroke</topic><topic>Web sites</topic><toplevel>online_resources</toplevel><creatorcontrib>Vaughan Sarrazin, Mary S.</creatorcontrib><creatorcontrib>Cram, Peter</creatorcontrib><creatorcontrib>Mazur, Alexandur</creatorcontrib><creatorcontrib>Ward, Melissa</creatorcontrib><creatorcontrib>Reisinger, Heather Schacht</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Docstoc</collection><collection>Nursing & Allied Health Database</collection><collection>ProQuest Health and Medical</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Public Health Database (ProQuest Medical & Health Databases)</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni)</collection><collection>ProQuest Central</collection><collection>ProQuest Central Essentials</collection><collection>AUTh Library subscriptions: ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>Consumer Health Database (Alumni Edition)</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Consumer Health Database</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>PML(ProQuest Medical Library)</collection><collection>Nursing & Allied Health Premium</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>MEDLINE - Academic</collection><jtitle>The patient : patient-centered outcomes research</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Vaughan Sarrazin, Mary S.</au><au>Cram, Peter</au><au>Mazur, Alexandur</au><au>Ward, Melissa</au><au>Reisinger, Heather Schacht</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Patient Perspectives of Dabigatran: Analysis of Online Discussion Forums</atitle><jtitle>The patient : patient-centered outcomes research</jtitle><stitle>Patient</stitle><addtitle>Patient</addtitle><date>2014</date><risdate>2014</risdate><volume>7</volume><issue>1</issue><spage>47</spage><epage>54</epage><pages>47-54</pages><issn>1178-1653</issn><eissn>1178-1661</eissn><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.</abstract><cop>Cham</cop><pub>Springer International Publishing</pub><pmid>24030706</pmid><doi>10.1007/s40271-013-0027-y</doi><tpages>8</tpages><oa>free_for_read</oa></addata></record> |
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subjects | Anticoagulants Benzimidazoles - administration & dosage Benzimidazoles - adverse effects Benzimidazoles - therapeutic use beta-Alanine - administration & dosage beta-Alanine - adverse effects beta-Alanine - analogs & derivatives beta-Alanine - therapeutic use Consumer Health Information - methods Content analysis Dabigatran Drug dosages Drug Interactions Fibrinolytic Agents - administration & dosage Fibrinolytic Agents - adverse effects Fibrinolytic Agents - therapeutic use Food-Drug Interactions Health Administration Health Economics Humans Internet resources Medicine Medicine & Public Health Original Research Article Patient Safety Patients Perception Pharmacoeconomics and Health Outcomes Population Public Health Qualitative research Quality of Life Research R&D Research & development Social Media Stakeholders Stroke Web sites |
title | Patient Perspectives of Dabigatran: Analysis of Online Discussion Forums |
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