Safe drug use in long QT syndrome and Brugada syndrome: comparison of website statistics

• Published in: Europace (London, England) England), 2013-07, Vol.15 (7), p.1042-1049
• Main Authors: Postema, Pieter G, Neville, Jon, de Jong, Jonas S S G, Romero, Klaus, Wilde, Arthur A M, Woosley, Raymond L
• Format: Article
• Language: English
• Subjects: Adult; Brugada Syndrome - chemically induced; Brugada Syndrome - mortality; Brugada Syndrome - prevention & control; Clinical Research; Death, Sudden, Cardiac - etiology; Death, Sudden, Cardiac - prevention & control; Drug Information Services - statistics & numerical data; Drug-Related Side Effects and Adverse Reactions - etiology; Drug-Related Side Effects and Adverse Reactions - mortality; Drug-Related Side Effects and Adverse Reactions - prevention & control; Female; Health Knowledge, Attitudes, Practice; Humans; Internet - statistics & numerical data; Long QT Syndrome - chemically induced; Long QT Syndrome - mortality; Long QT Syndrome - prevention & control; Male; Middle Aged; Patient Education as Topic; Prospective Studies; Risk Factors; Surveys and Questionnaires; Treatment Outcome
• ISSN: 1099-5129; 1532-2092
• DOI: 10.1093/europace/eut018

We sought to obtain insights into the efficacy of two websites, www.QTdrugs.org and www.BrugadaDrugs.org, that have the intention to prevent fatal arrhythmias due to unsafe drug use in Long QT syndrome and Brugada syndrome. Prospective web-use statistical analysis combined with online surveys were employed. Our main outcome measure was the percentage of Long QT syndrome patients and Brugada syndrome patients reporting refraining or discontinuation of possible unsafe drugs. QTdrugs.org has received >3 100 000 visitors from 180 countries. Most visitors originated from the Americas (87%), as compared with Europe (7%), Asia (3%), Oceania (2%), and Africa (1%). The QTdrugs.org survey yielded 340 respondents: 34% were patients and 50% medical professionals. Of the patients, 79% reported that they refrained from, and 61% reported discontinuing drugs due to the website. The website was very much appreciated by 65% of the respondents and 30% found it rather helpful. The BrugadaDrugs.org received >48 000 visitors from 154 countries. Most visitors originated from Europe (46%) and the Americas (39%), but less from Asia (10%), Oceania (4%), and Africa (