Hi, this is Eric Berstowski. Welcome to another segment of EP on EP. We've just heard a discussion by Dr. Michael Ackerman from the Mayo Clinic on this whole concept of return to play, especially in athletes who have long QT syndrome. What we didn't get into in the first segment was the complex shared decision-making tree that he has gone through, and I've asked him to come back to share that with us today. So Michael, welcome back and thank you. It's great to be back for part two. I love it. For part two, I know you have a system that you've used and you've developed, and I'd love you to share it with us. I gather it's a multi-point system, so let's start with point one. Tell us what you do and what your system is. Absolutely. I think if the cardiology community embraces the idea that we've gone from, if in doubt, kick them out, to maybe kick everybody out unless it's just in your genetic code, to maybe a return to play as possible after you've been well-evaluated, well-diagnosed, well-risk stratified, well-treated, and well-counseled. In other words, that's shared decision-making. If a sports cardiologist is ready to embrace shared decision-making for an athlete with long QT syndrome, hypertrophic cardiomyopathy, really any genetic heart disease from my standpoint, I think there are at least six critical elements. I think the first and most important one is for that cardiologist to ask him or herself the question, am I the right person to be doing this? Let's talk about that because here's the problem. There are not many you around. In fact, when I've even looked around sometimes to hire somebody with the skill set, it's hard to find people. I understand what you're saying, but what's the practical answer to that? Not everybody can be shipped to the mail. Right. I'm not saying that I'm the only best person, but I am suggesting that you and your family would never want me to do your ablation to install a defibrillator. That's not in my wheelhouse. I think we defaulted and assumed that long QT syndrome and CPVT, that it's well comfortable in the wheelhouse, if you will, of heart rhythm specialists. I think in a lot of situations, it's just not. It's outside their bullseye. It's outside their comfort zone. As we know, anything that's outside of our comfort zone, we're either going to under diagnose, over diagnose, undertreat, overtreat, over restrict, and over implant. I think it's okay for a cardiologist to acknowledge to that athlete, look, I might be inclined to disqualify you because we often hear them say, if you were my son, I would kick you out. I often will counter that and say, well, do you love your son? Do you love your daughter? It's much more complicated than just injecting our paternalism or maternalism onto the subject. I only say that not to say that the cardiologist can't do it, but to also say that sports cardiology is very nuanced and it is a specialty. These kind of issues deserve the attention as much as learning the skills to be an implanter or an ablator. They're different skills, but they are very important and it's okay to pause and say, maybe I'm not the best cardiologist to deliberate over this return to play issue. Yeah. I do think you make a very good point there. Let's say the person now is in front of an appropriate person who has at least the knowledge to go through the system. What's point two? Point two is the veto vote. By veto vote, I mean within the family unit, especially if it's a minor, an adolescent, that the mother, father, and the athlete can self-disqualify. If there's one veto within that family unit, self-disqualification is declared because we have to have the family unit on the exact same page. That might not happen overnight. Oftentimes, the dad is sitting there in the corner like, what's the big deal? Let's get Johnny in the game tomorrow. And the mother is envisioning that her permission to let their son or daughter return is setting the child up for their funeral. And so she's agonizing over this. Now, it's not always that way, but often it is. So we spend a lot of time to have the family realize, take your time with this decision. And that it may take weeks, months for the family team to get on the same page. And if there's one person not on the page, that person is self-disqualified. And with that exercise in place, we fully have 10% to 15% of all of the athletes who come to see me ultimately disqualify themselves and decide together that, no, we're not going to continue. It's not worth it for whatever they assess worth to be. So Michael, with this veto vote, I like the way you've stated that. Do you, in your initial discussion, get a sense of that? So you do kind of figure that right away there may be? Because I'm assuming some families come and everybody's on board right away. Look, mom and dad are on board and the kid wants to get back, right? Absolutely. And even those who think they're all in right away, I challenge them to make sure, are you really all in? Have you weighed the risks and benefits in the balance as best as I can forecast them? Got it. So I'm sure that if there's a 0.2 with you, there's always a 0.3. Yeah. The third in our drill is really important. It's called no covert operation. And by that, I mean, the number of athletes, and I'm sure they come to you as well, have been like, okay, can we keep this on the low down? Just we'll know what the drill is. Just don't tell our school. Don't tell the team. Don't tell my coach. And if they have that, then I'm not in, I'm not on their team then. So we must inform the appropriate coaches, school officials, university officials, professional organization, so that there are no surprises. It never works out well if there's a covert operation. Does that ever hurt though? I know this, let's say the kids now applying to, well, let me put it a different way. Um, we, I live in Indianapolis and, you know, we get involved sometimes with the NFL combine and I know there are athletes who refuse things, uh, I mean, because they don't want to be found out. And I think that's their prerogative. They can turn down things. So you ever get in a situation where they say to you, uh, listen, you know, I'd rather you not say anything to anyone is what you're saying. Isn't that, then you're out. Is that what that means at that point? Yeah. It's their prerogative to want the covert operation. It's my prerogative to then say I'm the wrong physician. I got it. I got it. Because I just think it's dangerous to not have the drill because that leads into my fourth part is how do you establish the safety drill? If you're not willing to let the key people know about the low possibility, but the non zero possibility that their heart could trigger an episode, uh, during their sport or during any other activity of daily living. Is that fourth one? I'm going to just guess. Is that like the AED component here? Exactly. It's the safety drill and the safety drill includes the automatic external defibrillator. The AED is their safety gear. Not yes, there's some, there's one somewhere in the building and I think somebody has the key to it. No, this is that athlete's own AED. Just like if the athlete had a life-threatening peanut allergy, they wouldn't be wondering where the EpiPen is. They would say my EpiPen is in my bag. And so our drill is the same. It's really straightforward. This drill that I'll tell you has actually never been executed in any of my 700 athletes for over 20 years, but it's still there. It's called Boy Scout be prepared. And it's that if, if you collapse and you don't wake up within 10 seconds, you must assume that it's a disease triggered cardiac arrest. You then activate 911. You do chest compressions, only CPR, you grab the AED and you apply it and you deliver the shock if instructed to do so. So how can you establish the drill? The fourth critical thing, if you're trying to keep everything covert. And so those two go hand in hand. Gotcha. So now we've gotten through that part. Are there additional things that you make as part of your assessment? Yeah, the fifth. And we kind of touched on it at the end of part one is to help them realize that there's a marked transition from varsity level high school sport, division two collegiate sport to the world of division one university and professional that you need to help them have eyes wide open, that things will transition from shared decision-making where that high school will almost always accept your and are my permission. But at division one university and professional, it shifts to TDM, their decision-making or BDM business decision-making. And so you, you need to help that athlete and their family realize that you need the stakeholders to agree and approve before they sign anything. Right. But I'm guessing at that point, your involvement is more of just, this is what I can tell you. I mean, these are at that point, almost business decisions, right? It is. But there, if you're going to be that patient's physician, you have to realize that you're also committing to a significant amount of advocacy where you need to be readily available for that call from the trainer, the team physician, the university lawyer, to help them understand why you think that their weather forecast or their disease risk forecast is acceptably low that they can navigate this non-zero risk proposition. And the landscape changes. It depends on, did anything ever tragic happen at university X? If there's institutional memory, they're going to be reluctant to take on an athlete with that entity and so forth. Got it. And what is the last, the sixth point in your schema? Yeah. The sixth for the cardiologist and for the families is to document. It is to care to, I'm not afraid of getting sued, but it's to document to say, we have discussed this. I've answered all their questions. The athlete and his mom and dad are proceeding with eyes wide open. They know that there is no such thing as zero risk. They know that even with the readily available AED safety drill that I've outlined, an event could happen and that they could still die. And I think it is only fair that we make it as blatant as that so that everybody's knowing that we're not dealing with, you know, a fingernail blemish. This is a real genetic heart condition with measurable non-zero risk of awful. The end point isn't just, I twisted my ankle. The end point is the full whammy tragedy and that everybody's on the same page and that we're weighing the risks and the benefits and the balance. And I just think that it is wise to document so that all parties involved know about the non-zero risk landscape that we're willing to take on. Michael, thank you so much. You know, having heard your full six points, it makes your initial point really, really crystal clear. This is a complex process that requires a lot of knowledge, a lot of experience that you clearly have, but hopefully there are enough people around in major areas that they can do the similar thing. This has been a great discussion. Thank you for the first part. And thank you even more for the second part. And I wish you well. Thanks a lot. And I really appreciate you having us on and choosing this topic. And I can't wait to do it live with you, maybe next year at Heart Rhythm Society. Be my pleasure. Mine as well.

Dr. Michael Ackerman

Mayo Clinic

long QT syndrome

shared decision-making

cardiologist