Here you can find questions and remarks we have received from the users of this website and from the respondents to our survey. Especially the respondents to the survey have fueled this page with frequently asked questions and we hope that we can better meet your needs with this addition to the website.

We have chosen to separate the questions into those from physicians and other medical professionals and into those from patients and/or their family members. We do our best to answer your questions as good and as generally applicable as we can, but please know that also for these answers we are obliged to mention our disclaimer.

Questions from medical professionals

• Can we provide guidance regarding anesthesia for Brugada syndrome patients?
  • A review and discussion on this issue was performed by our colleagues from the Mayo Clinic, Rochester, Mn, USA. You can find it here. For further questions you may also contact us through our contact form.

• How do I know that the website and the letters are up to date?
  • On the patient letter page there was a date mentioned already to indicate the latest update. However, we now also included a ‘valid through’ indication on the front page to provide information on the validity of the data about drugs on the website.

• Can you please provide the date at which changes were made to the website?
  • We have added this information to the update me page.

• Can you please provide guidance for the treatment of supra ventricular arrhythmias such as atrial fibrillation?
  • There are drugs that can be used to treat supraventricular arrhythmias such as atrial fibrillation (see. e.g. Postema et al. 2013). Also ablation therapy can be considered (see e.g. Conte et al. 2013) although the long-term efficacy in the setting of Brugada syndrome has not been settled. For pharmacological treatment of atrial fibrillation, Quinidine or Sotalol are probably most effective, where the former also exerts anti-arrhythmic effects for the prevention of ventricular arrhythmias. Beta-blockers, verapamil but certainly amiodarone should only be used after careful consideration. Ivabradine as a beta-blocker substitute may also be considered  (see. e.g. Postema et al. 2013).

 

Questions from patients and/or their family members

• Are all drugs on the list harmful for every Brugada syndrome patient?
  • No, most probably they aren’t all harmful or critical for the onset of symptoms for every single Brugada syndrome patient, except for the class I drugs in the ‘Avoid’ list. That is because every patient is unique. However, we can not tell in advance which drugs are and which drugs are not possibly harmful. Therefore we generally advise against all drugs in the list, especially for those in the ‘Avoid’ list. We generally also advise against use of the drugs in the ‘Preferably avoid’ list unless there are good reasons to administer this drug and/or necessary measures (such as ECG monitoring) have been or will be taken. It is reasonable to be more stringent for patients who have already experienced arrhythmias or even an aborted sudden cardiac arrest (i.e. resuscitation or appropriate ICD shock). In contrast, those patients with an ICD will be better protected against arrhythmias, and therefore drugs might be more easily tested for safety and efficacy. Please do know that there are patients with Brugada syndrome who are using drugs from the preferably avoid list without complications under supervision of a medical specialist experienced in Brugada syndrome.

• What about drugs and/or herbs that are not on the lists?
  • Generally speaking we can state that we do not (yet) have any evidence that those drugs might be harmful because of Brugada syndrome. It is the prescriber of the drug that needs to weigh the pros and cons of every drug, and he or she might want to avoid drugs that can be regarded to be similar to the drugs that are on the list. Of course, the lists will change during time, so what is not on at one point may be added later and visa versa. Moreover, it will always be important to adhere to maximal dosages. Over-the-counter drugs and herbs are generally not regulated so we can only advise to be cautious and otherwise ask your own doctor.

• What about drugs that may prolong the QT interval?
  • Generally speaking, Brugada syndrome patients do not have Long QT syndrome. There are only a few unique mutations in Long QT syndrome type 3 of whom the carriers may display both Long QT and Brugada syndrome like features. Only for those patients we will advise against drugs on www.BrugadaDrugs.org and against drugs on www.QTdrugs.org. Otherwise, we can not advice against drugs that may prolong the QT interval in Brugada syndrome patients as long as maximal dosages are adhered to (corrected for kidney and liver function). It is true that some drugs are on both websites as they may be harmful to both Brugada and Long QT syndrome patients.

• What about brand names vs. generic?
  • The website is visited by people from over 190 countries world-wide. Unfortunately, most drugs have multiple different brand names in different countries (some have over 100 different names!). We have now created a new page listing the brand names we could find for the drugs listed. Please know that this list can not be exhaustive. So please do urge your physicians and/or pharmacists to provide the generic names of all your drugs, this will make searching the website much easier.

• Are there safe alternatives for the drugs mentioned on the website?
  • This is a difficult issue and we have indeed been discussing this. Our conclusion is, however, that we can currently not provide such information. That is because there are almost no scientific reports on drugs that have indeed been used by Brugada syndrome patients without harmful side effects. Moreover, as every patient is unique, we can not just assume that only that drug is taken and that, for example, kidney and liver function are normal. Therefore we can not judge in advance that a given drug will indeed be safe. We are well aware that this remains a problematic issue for both physicians and patients. Of note, there are many examples that certain non-drug alternatives may be very worthwhile, such as in depressive or anxiety disorders in combination with Brugada syndrome in which patients have received successful psychotherapy (e.g. cognitive behavioral therapy). In addition, we do encourage both patients and physicians to send us their positive experiences with drugs (contact form here). We will save this information and we will in the future possibly be able to publish this information on the website.

• Is there a forum for patients?
  • Yes there is, there are even several. On www.brugada.org you can find both an international and Spanish forum. You can find the forum of the international and Spanish support groups here. A Dutch patient forum can be found here. These discussion boards are used by patients to address concerns and/or to find support from others with the disease. The Sudden Arrhythmia Death Syndromes (SADS) Foundation (website) also has offices around the globe to support patients and families with arrhythmia syndromes such as Brugada syndrome.

• Can we make the website better known to physicians around the world?
  • We are indeed working on this issue. The survey we have launched in November 2011 helps in this respect.

• Can we publish a list of doctors familiar with Brugada syndrome?
  • At this moment we can not provide such a list. Such a list might also have some legal consequences. We will further discuss this and update the website when approved.

• Can I add all my doctor’s email addresses to the ‘Update me‘ page? So they will be notified every time there is a change of drugs.
  • We can only allow people to opt in for the Update emails for them selves. That is why a confirmation email is send to the provided email address to make sure that someone is indeed willing to enter the list. We do encourage that you make your physicians aware of this website and of the possibility to subscribe to the update emails.

• Can we make an application (‘app’) for iPhone, iPad or Android?
  • Unfortunately we do not have the funds currently to provide such a service. The hosting of this website is already made possible by unrestricted support from the Cardionetworks Foundation, a non-profit organization founded in 2007 and based in The Netherlands. The goals of the Foundation are: “to improve medical knowledge, especially in the field of cardiology, and to provide access to this knowledge by facilitating publications in digital or other form, amongst other means by building and maintaining websites“. When you would like to donate to this website and/or Cardionetworks, please see the ‘Donate page‘.

• Can we publish the latest research breakthroughs on Brugada syndrome?
  • As the successful outcome of the latest scientific research needs to be confirmed by other research groups there is a necessary delay (often taking many years) before these breakthroughs can be regarded safe and indeed worthwhile for patients around the world. Every so many years a group of internationally recognized experts on Brugada syndrome come together to evaluate the latest evidence and to write a consensus report in which they give guidelines for physicians world wide. The latest consensus report has been published in 2013. Meanwhile, for non-medically trained patients it will be hard to understand and appreciate the many controversies and uncertainties that accompany scientific research reports. Therefore, we have committed ourselves to only provide guidelines and information that have been agreed on by the experts on Brugada syndrome. With the help of our Advisory Board we are able to provide information and advice regarding the latest scientific reports on drugs in Brugada syndrome. Generally from the moment a drug is related to untoward events in a scientific report published on PubMed we only need a couple of weeks to produce a recommendation and adjust the website accordingly. Also we always send an email update with this essential information to all our subscribers.

• How do I know that the website and the letters are up to date?
  • On the patient letter page there was a date mentioned already to indicate the latest update. However, we now also included a ‘valid through’ indication on the front page to provide information on the validity of the data about drugs on the website.