2020 AHA/ACC Guideline Updates: Hypertrophic Cardiomyopathy

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You’re listening to ReachMD, and this is Advanced Treatments and Innovations from Mayo Clinic. Here’s your host, Dr. Jennifer Caudle.

Dr. Caudle:
Hypertrophic cardiomyopathy is a disease that often goes underdiagnosed, leading to life-threatening consequences. For patients suffering from this disease that are asymptomatic and unaware, how have the 2020 AHA/ACC guidelines changed to help better detect and treat this potentially fatal disease?

This is ReachMD and I am your host, Dr. Jennifer Caudle. Here with me to discuss these guidelines and the treatment landscape for hypertrophic cardiomyopathy is Dr. Steve Ommen, a cardiologist and medical director of the Hypertrophic Cardiomyopathy Clinic at Mayo Clinic and the chair of the 2020 AHA/ACC Hypertrophic Cardiomyopathy Guideline Writing Committee. Dr. Ommen, thank you for joining us.

Dr. Ommen:
Thank you for having me on.

Dr. Caudle:
Of course. So, to start, can you tell us a little bit about these guidelines, and what do cardiologists and primary care doctors need to know?

Dr. Ommen:
Yeah, so the guidelines, as people are likely aware, but worth covering is really a two-year process, from selecting the writing committee to reviewing literature since the last time a guideline had been published for any particular disease, vetting that data and coming up with recommendations with a goal to aiding the clinical practice for all providers taking care of patients with hypertrophic cardiomyopathy. And so this year, in November, we published our 2020 guideline. There are a few things that are updated compared to the prior version and one of them is an emphasis on shared decision-making with patients to make sure that patients have a voice, as diagnostic and treatment decisions are being made for their individual care. There’s also a focus, for the first time in a guideline document, on making sure to incorporate the role of specialty centers, so-called centers of excellence, as part of a patient’s care. Particularly for this condition, which most cardiologists only see a handful during their careers, it makes it difficult to be up on some of the more nuanced conditions that can happen to patients during their journey with hypertrophic cardiomyopathy. And then largely, the guideline is really trying to interpret what the expert centers are already doing in their practices and trying to reinterpret that so that providers who don’t work in expert centers can get patients, sorted down the right pathway for their assessment in care and then engaging those experts when needed. So, there’s, there’s a lot of evolution in these guidelines compared to the last time.

Dr. Caudle:
Interesting. And do you think these guidelines will change Mayo’s practice?

Dr. Ommen:
I think that the guidelines largely reflects the practice that we at Mayo have been using, and so the idea is to take what we’ve learned through the research and academic enterprise, interpreting it in our center, but now making it available for practicing cardiologists and primary care specialists who have these patients in their practice to understand what the current state-of-the-art care is, so it’s not so much changing our practice, as reflecting the changes we’ve made over time so that the rest of the medical community can take advantage of those learnings.

Dr. Caudle:
And are there any areas of contention or controversy in terms of these guidelines?

Dr. Ommen:
Yeah, there’s a couple of points that are worth going into. One of the more longer parts of a discussion with a patient with hypertrophic cardiomyopathy has to do around the risk of sudden cardiac death and whether that patient wants to pursue getting an implantable defibrillator. So, the overall risk for sudden cardiac death in HCM, generally, is about 1% per year, but there’s a number of risk factors that can be used to identify patients who have higher-than-usual risks and trying to incorporate that into a discussion that helps the patient decide whether or not they want an implantable device or not, is a difficult conversation. And over the past decade, there’s been a little bit of controversy over the best way of utilizing the presence or absence of certain risk factors to make that decision or a novel risk calculator that gives the patient the concept of the magnitude of their risk. And trying to bring that international controversy to some sort of middle ground is something that we tackled in this guideline and tried to incorporate both approaches. We identified that the patient has risk factors, or not, and then we use that risk calculation to give the patient the idea that, “Well, if your risk is 6% over the next 5 years of having a sudden death event”, but letting the patient express their risk tolerance because some people would hear that 6% as a really scary number and other patients are going to hear that as a 94% chance that nothing’s going to happen to them and maybe they don’t want a device in that circumstance and so that’s a little bit of a controversy of actually trying to bring a controversy to a less heated debate.

The other major controversy and this is how we approach exercise and sports participation for patients with HCM, based on historic data that show that among athletes who have died suddenly, hypertrophic cardiomyopathy appears to be over-represented. But more recent studies that focus on HCM patients can’t detect that among HCM patients, athletes or heavy exercisers are dying faster than their non-exercising counterparts. And so trying to justify those two things, which likely means, yes, risk is higher, but that risk is probably small enough that current studies are underpowered to detect that difference, how do you counsel an individual patient who might be an athlete who wants to continue, perhaps with a life-changing career. And what we’ve done in the guidelines where before, it was prohibited, we were basically said HCM patients should not compete in athletics, we have opened up the possibility again for an individualized discussion with that patient to understand what the risks may be and whether or not they want to continue to pursue that, recognizing that the conversation between me, as the practicing cardiologist, and the patient, won’t decide whether they can play for a given team or college, per se, because that team or college is likely going to have their own medical and legal staff that’s going to weigh in on that decision, but it opened up the possibility for dialogue, rather than just a dogmatic closed door.

Dr. Caudle:
For those of you who are just joining us, this is Advanced Treatments and Innovations from Mayo Clinic on ReachMD. I’m your host, Dr. Jennifer Caudle and today I’m speaking with Dr. Steve Ommen, chair of the writing committee for the updated 2020 AHA/ACC guidelines for the diagnosis and treatment of patients with hypertrophic cardiomyopathy. We are talking about these guidelines and emerging treatment options, as well. So, Dr. Ommen, let’s switch gears and talk about treating this disease. Are there any new treatment options that you’d like to discuss?

Dr. Ommen:
The current toolbox for treating patients with hypertrophic cardiomyopathy is largely the same in terms of which medications we use and which procedures we may use if medications aren’t successful. What we’ve done in this guideline is tried to be a little bit more clear in how you progress step-wise care, and the indications for surgical or other interventional cardiology procedures for patients is slightly more open than it was a decade ago, but we’ve tried to be very, very clear on when you might consider advancing a patient to an invasive option. One of the things that’s getting a lot of attention in press these days is a new drug that has been targeted specifically for the treatment of patients with HCM, but because that drug has just finished its first trials and is not yet FDA approved, we don’t talk about its place, or potential place, in therapy in this guideline document because it hasn’t been formally vetted with the long-term safety data. So, we do mention it in a future section the guideline, but we don’t talk about where that might fit in and I think that we’re going to see that evolve over the next couple of years.

Dr. Caudle:
Excellent. And finally, Dr. Ommen, what’s one key takeaway that you’d like our audience to bring home?

Dr. Ommen:
I think, again, in hypertrophic cardiomyopathy patients deserve the opportunity to participate in the decisions about their diagnosis and treatment options. That team that helps patients through those decisions includes their primary care providers, their primary or local cardiologists and if that primary or local cardiologist isn’t an expert at HCM, then likely there’s also going to be an expert who’s also part of that person’s team. And that broad team that helps take care of one patient, we believe is the optimal way to treat patients with hypertrophic cardiomyopathy. And using that scheme has resulted in an improvement in the outlook for patients in HCM, where traditionally it was felt to be a disease that was fraught with morbidity and mortality. Now, we know this disease, when treated according to these guidelines, is completely compatible with normal longevity and a great quality of life.

Dr. Caudle:
Well, with that key takeaway in mind, I’d like to thank my guest, Dr. Steve Ommen, for sharing his insights on these updated guidelines and emerging treatment opportunities for hypertrophic cardiomyopathy. Dr. Ommen, it was great having you on the program.

Dr. Ommen:
Thank you, very much.

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