HCM Researchers Put their Heads Together to Improve Lives of HCM Patients

A recent paper published in the journal Circulation looked at the clinical course of approximately 4,600 HCM patients over the course of more than 24,000 clinical years, which the paper describes as the largest comprehensive cohort of HCM patients ever studied.

This study examined patients from eight high volume HCM centers which aggregated their institutional data into a database known as the Sarcomere Human Cardiomyopathy Registry (or the acronym the “SHaRe” for short). The results of the study showed that, in general, HCM patients are at substantially elevated risk for atrial fibrillation and heart failure, and have significantly higher mortality rates than that of the general U.S. population.

The SHaRe Registry centers that participated in the study are:

  • Brigham and Women’s Hospital, Boston
  • University of Michigan Medical Center
  • Stanford University Medical Center
  • Boston Children’s Hospital
  • Yale-New Haven Hospital
  • Careggi University Hospital, Florence, Italy
  • Erasmus University Medical Center, Netherlands
  • Laboratory of Genetics and Molecular Cardiology, Sao Paulo, Brazil

Working together, these centers, led by Dr. Carolyn Ho, M.D. of Boston’s Brigham and Women’s Hospital, made some significant findings.

Patients with HCM Genetic Mutations Fare Worse HCM patients with a known genetic mutation were diagnosed with clinical disease at a younger age (37.5 years, compared to 51.1 years for patients without a mutation) and were more than twice as likely to experience HCM-related complications and early death than HCM patients who had a non-genetic form of HCM.  Patients with more than one mutation and those who carried a MYH7 mutation were found to have a higher risk of HCM related complications than those with single mutations or those with a MYBPC3 mutation.

HCM Burden Increases Over Time:  The burden of disease and complications increased progressively over time for HCM patients, with most HCM-related complications occurring later in life between the ages of 50-70 years.  In particular, the researchers found that patients who were less than 40 years old at diagnosis had a 77% chance of having an adverse incident such as a cardiac arrest, heart failure, atrial fibrillation, stroke, or death by the time they reached age 60. The most common complications were heart failure and atrial fibrillation.  In contrast, patients diagnosed with HCM after the age of 60 years of age had only a 32% cumulative incidence of such complications by age 70 years.

HCM Mortality is Significant:  Mortality among HCM patients was found to be significantly higher than that of the general U.S. Population. In fact, among young HCM patients ages 20 – 29, mortality was found to be four times higher than that of their healthy counterparts.

The lead author of the paper, Dr. Ho, suggests two major takeaways from this research:

1. A young age of diagnosis and the presence (or absence) of sarcomere mutation(s) should be taken into consideration when forming treatment plans.

2.  Given that the majority of HCM complications occur later in life, there is need for long-term care and follow-up of HCM patients, as well as for the development of new therapies that prevent long term complications such as heart failure and atrial fibrillation.

 

Atrial Fibrillation: Treatable HCM Complication

A recent paper by doctors at Tufts University’s HCM Center found that transient episodes of atrial fibrillation (AF) are treatable and do not often progress to permanent AF.

This study found that AF was not a frequent cause of death by heart failure or sudden cardiac arrest.  However, the researchers identified AF as an important cause of stroke in HCM patients.  Therefore, they recommend a low threshold for starting HCM patients on anti-coagulants following an initial AF episode.

Researchers in this study analyzed statistics from 1558 HCM patients, 20% of whom experienced AF.  74% experienced only sporadic episodes, while 26% went on to develop permanent AF.

At the time of publication, 91% of the 277 of the patients included in the sample were still alive and between the ages 49 and 75 years old.

According to an accompanying editorial by Italian HCM expert Dr. Paolo Spirito, the outlook for HCM patients with atrial fibrillation has improved over the last twenty years due to significant advances in HCM treatment over that time period such as ICD implantation and myectomy, along with aggressive anti-coagulation for atrial fibrillation patients.

Spirito also noted that it is difficult to predict whether a given HCM patient will go on to develop permanent Afib after a single episode since many will not.  Additionally, permanent afib can be well tolerated when there is contemporaneous control of heart rate.  Therefore,  anti-arrhythmic medications, which can cause unpleasant side effects, may not be necessary for HCM patients with afib as long as anti-coagulation measures are taken.

 

 

 

Could Your Fitbit Detect AFib?

The same Fitbit you wear to count your steps may soon have an additional purpose:  it could detect atrial fibrillation.

Atrial fibrillation is an irregular heartbeat which could cause a stroke if not properly treated.  Yet, it often goes unnoticed by a person experiencing it.

According to this story in Time, Fitbit is  developing software which would enable its existing trackers to detect afib, and thus allow time for appropriate action before it is too late.

This technology could be of great benefit to heart patients.  Not only does the Fitbit encourage you to exercise, it might just save your life!

Aspirin May Cause More Harm than Good in Afib

According to new research presented at last week’s meeting of the Heart Rhythm Society, aspirin is not effective in preventing strokes in patients with atrial fibrillation, and in some instances may actually do more harm than good.

Note that previous studies have demonstrated that aspirin is not effective in preventing strokes from Afib.

In fact, the study, led by Dr. Jared Bunch from Intermountain Healthcare system, Salt Lake City, UT, found that patients who were prescribed aspirin following catheter ablation procedures to treat atrial fibrillation were significantly more likely to suffer gastrointestinal or genitourinary bleeding than those who took other anticoagulants like warfarin, or those who received no treatment at all.

For more, see these articles from  Medical News Today  and Science Times (with link to video).

 

Can Your Apple Watch Spot Afib?

According to preliminary data presented this week at the Heart Rhythm Society’s annual meeting, the Apple watch. together with an app called Cardiogram, spots atrial fibrillation with 97% accuracy. 

Start-up tech company Cardiogram paired up with electrophysiologists at the University of California, San Francisco to try out the technology on patients awaiting cardioversion for atrial fibrillation.  51 patients at UCSF agreed to wear Apple Watches during their cardioversion procedures.

Heart rate samples were obtained before the procedure, when the patient was in atrial fibrillation, and again afterward when heart rhythm had been restored to normal. The researchers found that the Apple Watches were able to detect afib 97% of the time.

The Cardiogram and UCSF teams hope to publish their findings in a peer-reviewed journal while Cardiogram hopes it can make this information useful to consumers.  One possibility would be to have the watch send a notification to the wearer that s/he appears to be in afib should contact her/his care provider immediately.

If you are interested in participating in this research, click here.

Read more about it at TechCrunch, BuzzFeedApple Insider and CNET,

Catheter ablation useful for AFib in HCM

A recent article published in Heart looked at the safety and effectiveness of catheter ablation for the treatment of Atrial Fibrillation in patients with HCM by performing a systematic review of prior publications on the subject.

The researchers concluded that even though the success rate for HCM patients was approximately half that of patients who suffered from AFib but did not have HCM, catheter ablation is still an effective treatment for HCM patients;  especially for those HCM patients who suffer from paroxysmal AFib and who have smaller atria.

Better Screening and Treatment Necessary for Atrial Fibrillation

 

An August 20, 2016 article in The Lancet points out that many physicians do not effectively screen for or properly treat Atrial Fibrillation. Furthermore, aspirin, which is often given as a treatment for A-fib, is insufficient to prevent stroke.

If A-Fib is detected, treatment with anti-coagulants is essential.

Unsuspected AFib Detected in HCM Patients

A recent retrospective study published in the Journal of Cardiovascular Electrophysiology found that atrial fibrillation (AF) occurred for the first time in 16 of 30 patients (53%) of patients with implantable devices being followed at the center conducting the study.

Of the patients experiencing AF for the first time, 14 of 16 (88%) of the patients were not aware of having experienced any clinical symptoms.  As patients age, AF appears to be a common consequence of HCM.  Patients may be caught unaware and unprepared, so monitoring is especially important.

Aspirin Not Best to Treat A-fib

 

According to a recent study published June 20 in the Journal of the American College of Cardiology, more than 1/3 of patients in atrial fibrillation are not receiving sufficient anti-coagulation.   Many of these patients are receiving only aspirin instead of a more effective blood thinner like warfarin, or one of the newer anti-coagulant drugs like Pradaxa or  Xarelto.

 

 

 

HCM GENOTYPE DOESN’T INFLUENCE ATRIAL FIBRILLATION

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In the April edition of the American Journal of Cardiology, Italian HCM experts published their findings which indicate that  an individual patient’s HCM causing gene does not influence chances of developing atrial fibrillation and shouldn’t influence the management strategies for the condition.