Patients Fare Best at HCM Specialty Centers

A recent retrospective study conducted by doctors at Yale -New Haven Health System found that patients with hypertrophic cardiomyopathy fare best when treated at a specialty center using a team approach to HCM. The study found that this was especially true for patients coming from disadvantaged backgrounds who often fare worse outside of a HCM specialty setting.

The findings of this study suggest that patients with HCM are best served when referred to HCM specialty care instead of receiving care solely from general cardiologists.

Riding Rollercoasters with HCM – Results Presented at AHA Meeting

In May of this year, HCMBeat published this interview with Yale’s Dr. Daniel Jacoby and Dr. Nikolaos Papoutsidakis about their online survey of HCM patients who engage in risk-taking activities.

In this conversation, Drs. Jacoby and Papoutsidakis emphasized that the shared decision making process is an important facet of the patient/physician relationship for HCM patients. Risks should be explained, and decisions made with each patient’s set of values and priorities in mind. The doctors hoped that the results from their study would help to inform the shared decision-making process as applied to activities that involve any amount of patient risk-taking.

In a poster presented at this weekend’s American Heart Association Scientific Sessions in Chicago, Drs. Jacoby and Papousidakis made the results of this survey public.

After analyzing data from 633 patients (282 men and 351 women), 556 patients reported participating in thrill-seeking activities, while 331 continued such participation after their HCM diagnosis.  The doctors found that only 33.6% of the patients who engaged in the thrill-seeking activities experienced such minor adverse events as dizziness, nausea, palpitations or chest pain, while only .02% experienced significant events during or within an hour following the activity.  Only one ICD shock was reported.

Hence, the doctors concluded that the risks associated with such activities appear to be low.

Riding Rollercoasters with HCM: A Conversation with Yale’s Dr. Daniel Jacoby and Dr. Nikolaos Papoutsidakis

Editor’s Note:  A few weeks ago I had the chance to sit down over Skype to talk with Yale University Medical Center’s Dr. Daniel Jacoby and Dr. Nikolaos Papoutsidakis about HCM patients who engage in thrill-seeking activities. 

Drs. Jacoby and Papoutsidakis are currently circulating a questionnaire via the internet in connection with a study they are engaged in related to the safety of these activities. They are hoping to obtain at least 500 more responses to their questionnaire from HCM patients around the world in the next two months. Keep reading to learn more about the study, and if you want to participate, a link to the survey is provided at the end of this article.

Are you a HCM patient who has ever wondered whether it was safe to ride on a roller coaster?  Well, it turns out that this question is one that HCM doctors encounter quite frequently from their patients. This question and the lack of empirical evidence about its safety inspired doctors at Yale School of Medicine and Yale New Haven Health Heart and Vascular Center to design a study to answer the question whether thrill-seeking activities are safe for HCM patients.

The literature about HCM is full of warnings against activities thought to be unsafe for patients with the standard response being “No!”  With the knowledge that patients ARE actually out there engaging in such activities, Drs. Jacoby and Papoutsidakis decided to go out to the internet and crowdsource more information.

Having already surveyed patients at Yale, the doctors sought to generate more data – their goal is at least 500 additional patients in the next two months – by crowdsourcing enough data to enable them to put together a statistically significant sample which could be written up in a medical journal. This information would serve as a resource to doctors caring for HCM patients who could bring data to the conversation with patients when asked about rollercoasters or other thrill seeking activities.

The activities chosen for the study’s questionnaire were specifically chosen from previously published literature describing high risk activities believed to be unsafe by most practitioners.

These activities are:

  • Rollercoaster riding
  • Jet Skiing
  • Rafting
  • Bungee Jumping
  • Rappelling
  • Paragliding
  • Kayaking/Canoeing
  • Motor Racing
  • Snowboarding
  • BASE jumping
  • Skydiving

The questionnaire also seeks to learn what lifestyle information has been provided to patients by their cardiologists.  As an adjunct to the study about thrill-seeking, the researchers also plan to examine whether there is a difference between patient lifestyle and/or overall health when treated by a community-based general cardiologist versus a HCM expert.

Drs. Jacoby and Papoutsidakis emphasized that the shared decision making process is an important facet of the patient/physician relationship for HCM patients. Risks should be explained, and decisions made with each patient’s set of values and priorities in mind. The doctors hope that the results from this study will help facilitate the shared decision-making process as it applies to activities that involve any amount of patient risk-taking.

Dr. Jacoby knows the importance of shared decision making between physician and patient from personal experience.  He and other members of his family have a genetic condition known as hypercholesterolemia, a condition that can cause early heart attacks. This gives him unique insight into what it means to be a cardiac patient and provided his young self with an unpleasant awareness of the fact that people may die early from heart issues.  This, for him, was an eye-opening experience and gives him a unique ability to understand and empathize with HCM patients who face similar issues every day and informs his professional goal of helping his patients live their best and most fulfilling lives.

Both doctors shared that although some might think that riding on rollercoasters or participation in extreme sports may seem to be a frivolous or unnecessary subject for scientific study, this is actually an issue that may genuinely impact the quality of life of certain patients.  Drs. Jacoby and Papoutsidakis want to help patients feel more reassured about engaging in these activities so that they can continue to enjoy activities that give them pleasure.  After all, acceptable quality of life and activities which provide fulfillment are subjective.

About the researchers:

Dr. Nikolaos Papoutsidakis is a research scientist at Yale. He received M.D. and Ph.D. degrees and his cardiology training in Greece at the University of Athens. Around two years ago, he joined Dr. Jacoby’s team as an Associate Research Scientist to work on cardiomyopathy research projects with an emphasis on HCM. Yale patients may recognize him because he often shadows Dr. Jacoby in clinic to keep track of patient data for the Yale Inherited Cardiomyopathies database. He was responsible for the design of the current survey, tracking of responses and correlating data.

Dr. Daniel Jacoby is the founder of the Yale Inherited Cardiomyopathy Program and runs the HCM Clinic at Yale where he treats approximately 500 HCM patients.  Dr. Jacoby’s undergraduate and medical degrees are both from Yale.  When a fellow at Columbia Presbyterian hospital in New York City, he took care of a young Venezuelan patient who suffered from HCM and this piqued his interest in HCM. After completing his training in NYC, he returned to New Haven to join the faculty at Yale Medical School in 2009.  At Yale, he had the opportunity to collaborate with longtime HCM expert Professor William McKenna, then of University College London, through a collaborative program between Yale and the University of London.


Welcome to the Hypertrophic Cardiomyopathy and Thrill-seeking Activities Survey page!

ICD May Not Bar Competitive Sports

It may be possible for some athletes to continue playing competitive sports despite having an implantable defibrillator according to a recent study published in this week’s Circulation.

The study followed 440 athletes with ICDs who participated in organized sports over a 4 year period. Diagnoses included HCM, Long QT Syndrome, and arrhythmogenic right ventricular cardiomyopathy (ARVC) .  Common sports for the patient-athletes were running, basketball and soccer.

Over the period of the study, 121 of the patient-athletes received a total of 184 shocks:   7% while participating in competition or practice, 5% during other physical activities, and 6% while resting.  No deaths were reported over the approximately 44 months study. “Even though some people did receive shocks while they were participating in sports, no harm came to patients,” said lead author Dr. Rachel Lampert, a professor of internal medicine at Yale School of Medicine.

The study did note that patients with ARVC who engaged in sports were more likely to experience life-threatening ventricular arrhythmias requiring therapy, and, were more likely to receive repeated shocks from their devices.  Hence, competitive sports may be inadvisable for ARVC patients.

For more details about this study, see this story from Health Day News and from Yale News.