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.

NOW THAT YOU HAVE READ ALL ABOUT THE SURVEY, FILL OUT A QUESTIONNAIRE YOURSELF! THE LINK IS JUST BELOW.  IT SHOULD ONLY TAKE YOU A FEW MINUTES.

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