Living with Vasovagal Syncope

STARS and Arrhythmia Alliance are working with Duke Clinical Research Institute, North Carolina, USA as they undertake a research project to better understand what is most important to people living with and experiencing frequent episodes of loss of consciousness (syncope/fainting) due to vasovagal syncope (VVS) (also called neurocardiogenic syncope (NCS)). Thank you for your interest and time.

The goal of treatment of vasovagal syncope (VVS) is to eliminate or reduce the frequency and severity of fainting episodes/unexplained loss of consciousness. The primary treatment for vasovagal syncope is avoiding situations that can trigger episodes and maintaining hydration. When fainting continues to occur, additional treatments may be helpful, including medications, implantation of a pacemaker, or potentially a new form of treatment called ablation involving catheters entering the heart (not surgery) to burn small areas of heart tissue that are affected in vasovagal syncope. The thin tube (catheter) is inserted through the groin and fed up into the heart (it is not open-heart surgery). On occasion this is undertaken under local anesthesia or general sedation.

We are undertaking a study to help us better understand how persons living with vasovagal syncope value different treatment options like medications, pacemakers, and other medical procedures.

Any results and reports that are published using the insights from this survey will not contain any personal or identifiable information. These anonymised results may be shared publicly, for example on public-facing websites or printed and distributed. Your involvement in this survey is voluntary, and you are free to stop completing the survey at any time.

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* 1. How long have you been diagnosed with vasovagal syncope (also called neurocardiogenic syncope)?

Less than six months

More than six months

More than one year

More than five years

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* 2. Is there a history of

Unexplained loss of consciousness in your family

Vasovagal syncope (also known as neurocardiogenic syncope)

Fainting

Epilepsy

Other diagnosis – please name below

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* 3. Have you ever had a Tilt Table test?

Yes

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* 4. Have you had an implantable loop recorder (ILR) / insertable cardiac monitor (ICM) / cardiac monitor (CM) inserted?

Yes

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* 5. How long from first episode of loss of consciousness to diagnosis?

One month

Six months

One year

Five years

More than five years

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* 6. How frequent are your episodes of loss of consciousness? (Choose whichever answer best describes you)

Once a year or less

Once every six months

Once every three months

Every month

Every two weeks or so

Every week

Several times a week

None of the above

The next few questions are going to ask you some questions about treatments for vasovagal syncope (VVS) (also called neurocardiogenic syncope (NCS)) and your preferences for potential treatments.

It is important to emphasize that medical treatment is usually not required to treat VVS unless conservative measures do not result in a satisfactory result. In some cases, success is complete elimination of episodes. In other cases, it may be reducing the frequency of the episodes; and in other cases, it may be reducing the severity of episodes (no longer losing consciousness completely).

The American Heart Association 2017 guideline for the management of patients with syncope (Greek word meaning ‘to faint’) (shown below) states that effective treatment is often needed, especially in patients who experience reduced quality of life due to their syncope events.[1] Unfortunately, there are limited evidence-based therapeutic options (treatments supported by robust clinical trials). In general, first-line treatment includes education, use of counter pressure maneuvers, and increase in salt and fluid intake. If these measures are not effective, daily medications or implantation of a pacemaker might be recommended (depending upon the specific patient situation).

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* 7. Recognizing the complexity of this condition and the limited evidence to support effective therapies, which of the following would you find most preferable as a treatment?:

(A) a daily medication that would reduce the risk of passing out,
(B) implantation of a permanent pacemaker that would reduce the risk of passing out,
(C) a minimally invasive catheter ablation procedure (no surgical incisions) where doctors put plastic tubes in the heart and cauterize (or destroy) small areas of heart tissue to reduce the risk of passing out.

Prefer medication

Prefer pacemaker

Prefer catheter ablation procedure

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* 8. In thinking about a one-time minimally invasive catheter ablation procedure, what would you consider a successful procedure?

Complete elimination of syncope events only

A 50% reduction in the occurrence of syncope events

Any reduction in the occurrence of syncope events

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* 9. If offered, would you be willing to participate in a clinical trial of a one-time minimally invasive catheter ablation procedure? Would you be willing to participate if half of the patients underwent a procedure where no ablation (the placebo group) was performed and the other half would receive an ablation? Only the researchers would know whether you had or had not actually had an ablation procedure for the purposes of this study. This research design would help doctors understand if the new ablation treatment improves outcomes.

I would be willing to participate in a trial

I would be willing to participate in a trial, but only if I was certain I would receive the ablation treatment

I would NOT be willing to participate

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* 10. Do you currently reside in the US?

Yes