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Shared Decision Making for Athletes with Cardiovascular Disease

Practical Considerations

Baggish, Aaron L., MD, FACC, FACSM1; Ackerman, Michael J., MD, PhD2; Putukian, Margot, MD, FACSM3; Lampert, Rachel, MD4

Current Sports Medicine Reports: March 2019 - Volume 18 - Issue 3 - p 76–81
doi: 10.1249/JSR.0000000000000575
Chest and Abdominal Conditions/Section Article
Free

The diagnosis and management of cardiovascular disease (CVD) in competitive athletes represent a fundamental responsibility of the sports medicine community. Following the diagnosis of a CVD in a competitive athlete, it is the responsibility of the sports medicine team to delineate an effective treatment and management strategy that places the health and wellness of the athlete as the primary objective. An essential and often challenging aspect of this process is determining the appropriateness of continued participation (i.e., “return-to-play”) in competitive athletics. Recently, a joint American Heart Association and American College of Cardiology Scientific Statement delineating sports eligibility supports a more patient-centered care model that supports shared decision making for clinicians and their patients/families. The present document was written to summarize the changing sports cardiology landscape with an aim of providing the cardiology and sports medicine communities with some practical approaches to eligibility decision making for competitive athletes with heart disease.

1Cardiovascular Performance Program, Cardiology Division, Massachusetts General Hospital, Boston, MA;

2Departments of Cardiovascular Medicine (Division of Heart Rhythm Services), Pediatric and Adolescent Medicine (Division of Pediatric Cardiology), and Molecular Pharmacology and Experimental Therapeutics (Windland Smith Rice Sudden Death Genomics Laboratory), Mayo Clinic, Rochester, MN;

3University Health Services, Athletic Medicine, Princeton University, Princeton, NJ; and

4Cardiology/Internal Medicine, Yale School of Medicine, New Haven, CT

Address for correspondence: Aaron L. Baggish, MD, FACC, FACSM, Cardiovascular Performance Program, Massachusetts General Hospital, Yawkey Suite 5B, 55 Fruit St, Boston, MA 02114; E-mail: abaggish@partners.org.

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Introduction

The diagnosis and management of cardiovascular disease (CVD) in competitive athletes represent a fundamental responsibility of the sports medicine community. Increasingly, multidisciplinary teams comprised of sports medicine physicians, athletic trainers, and cardiovascular specialists oversee preparticipation screening and symptom-driven assessment of athletes. These important efforts lead to detection of the underlying genetic, congenital, and acquired CVD that have been associated with sudden cardiac death (SCD) during sport. Following the diagnosis of CVD in a competitive athlete, it is the responsibility of the sports medicine team to delineate an effective treatment and management strategy that places the health and wellness of the athlete as the primary objective. An essential and often challenging aspect of this process is determining the appropriateness of continued participation (i.e., “return-to-play”) in competitive athletics.

For several decades, professional cardiology societies have sponsored and endorsed a series of clinical practice recommendations, known by practitioners as the Bethesda Conference Proceedings, designed to assist cardiovascular specialists and their sports medicine colleagues with eligibility recommendations. Until the most recent iteration (2015), this document presented a binary framework for decision making in which most cardiovascular diagnoses carried a definitive recommendation for complete exclusion from most forms of competitive athletics except for the so-called class IA sports of billiards, bowling, cricket, curling, golf, and riflery. Most recently, the Bethesda Guidelines have been replaced by a joint American Heart Association and American College of Cardiology Scientific Statement. This newest statement represents a paradigm shift in the approach to the athlete with established CVD, even SCD-predisposing CVD, moving away from paternalism toward a more patient-centered care model that supports shared decision making (SDM) for clinicians and their patients/families. The present document was written to summarize the changing sports cardiology landscape with an aim of providing the cardiology and sports medicine communities with some practical approaches to eligibility decision making for competitive athletes with heart disease.

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The Bethesda Conference Proceeding: From Past and to Present

The original sport eligibility recommendations emerged from the 16th Bethesda Conference and were first published in 1985 (1). As articulated in the preamble, “The focus of the 16th Bethesda Conference is the athlete with an underlying primary cardiovascular abnormality, and its goal is to arrive at consensus opinions for prudent recommendations regarding the eligibility of such athletes for competition.” This document was divided into eight sections or “task force” documents: legal consequences of standard setting for competitive athletes with cardiovascular abnormalities disease, classification of sports, congenital heart disease, acquired valvular heart disease, hypertrophic cardiomyopathy/other myopericardial diseases/mitral valve prolapse, systemic arterial hypertension, ischemic heart disease, and arrhythmias and contained a total of 114 formal recommendations. For each of the medical conditions discussed throughout the task forces, recommendations aligned with one of three general options including: 1) unrestricted participation in competitive sports, 2) complete restriction from participation in all competitive sports, and 3) participation permitted but restricted to low-intensity competitive sports specified as billiards, bowling, cricket, curling, golf, and riflery (the class IA activities).

In addition to providing the first framework for sports eligibility among athletes with CVD, the 16th Bethesda Conference proceedings proposed an operational definition of the competitive athlete, “as one who participates in an organized team or individual sport that requires regular competition against others as a central component, places a high premium on excellence and achievement, and requires vigorous training in a systematic fashion.” That document also established the notion that competitive athletes may be less capable, than other patient populations, to participate objectively in health and safety decision making. Setting the stage for decades of paternalistic clinical management, it was proposed that, “another important facet of competitive activity is that the athlete may not be able to use proper judgment in determining whether to extricate himself or herself from the competitive event, should that become necessary.”

These eligibility standards, under the auspices of Bethesda Guidelines, were updated in 1994 and then again in 2005 as the 26th and 36th Bethesda Conference Guidelines, respectively. Then, in 2015, a new joint scientific statement emerged from the American Heart Association (AHA) and the American College of Cardiology (ACC) referred to as the AHA/ACC Eligibility and Disqualification Recommendations for Competitive Athletes with Cardiovascular Abnormalities (2). This joint scientific statement from the two largest cardiovascular societies in North America was comprised of 14 Task Forces, containing approximately 250 total recommendations, which are presented using the ACC/AHA’s standard Class of Recommendations (COR), reflecting the strength of recommendation, and Level of Evidence (LOE) system (3). It is noteworthy that all of the return-to-play recommendations in the 2015 recommendation guideline are designated as LOE C, which indicates expert consensus opinion in the absence of randomized or nonrandomized clinical studies. This uniform designation reflects the fact that no randomized trial related to sport safety among athletes with CVD has ever been conducted. Nonetheless, clinical experience caring for athletes with CVD and the field of sports cardiology have grown considerably over the last few decades (4). In addition, several key observational studies have recently begun to refine our understandings of SCD during sport and the safety profiles of athletes that elect to participate following the diagnosis and management of heart disease (5–9).

These experiences are reflected directly in the most recent eligibility recommendations in a manner that represents a paradigm shift. Specifically, approximately 30% of the current eligibility COR are now categorized as class II. Class II eligibility recommendations, which state “(participation in sports) is reasonable (IIA) or may be considered (IIB)” reflect conflicting evidence, a divergence of opinion, or both about the usefulness or efficacy of competitive sport disqualification. Class II recommendations now exist where uniform exclusion from competitive sports is not felt to be appropriate either because risk of adverse outcomes appears to be low or disease-specific management may reduce risk to acceptable levels. It is important to note that class II recommendations now exist for numerous CVD that were previously treated with uniform and extensive competitive sports disqualification. Practically speaking, the wording of class II recommendations as “participation in sports is reasonable if…,” and “participation in sports may be reasonable after…” provide clinicians the opportunity to make case-by-case recommendations rather than defaulting to uniformly conservative exclusion recommendations.

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The Era of Class II Eligibility Recommendations: SDM

The introduction of class II eligibility recommendations has emerged in an era of patient-centered care (10). The notion that doctors always know best and should therefore decide what is right for their patients, has been replaced by a care model that fosters patient-clinician collaboration. Specifically, clinicians are now encouraged to present patients with the scientific facts and uncertainties relevant to their condition and to engage in an SDM process about subsequent management options. SDM is the process by which clinicians and patients work together to develop care plans based on clinical evidence that balance risks and expected outcomes with patient preferences and values. This SDM approach is most relevant when there is more than one reasonable treatment option, when no one option has a clear advantage, and when the possible benefits and harms of each option affect patients differently.

SDM has been used successfully for many clinical dilemmas across numerous distinct patient populations and when studied, has documented benefits including enhanced patient knowledge of their diagnosis, increased likelihood of patient compliance, and improved patient and clinician satisfaction. This approach is not new to sports medicine and has been proposed for return-to-play decision making among competitive athletes with musculoskeletal injury (11).

Why should we now embrace SDM among competitive athletes with CVD (12)? There are several potential synergistic answers to this question. First, the absolute risk of continued competitive sport participation following a cardiovascular diagnosis is incompletely understood. While case series have established numerous CVD associated with death during sport, they are incapable of quantifying risk for an individual patient. The uniform restriction from sport for all athletes with heart disease fails to acknowledge that there is differential risk across conditions (i.e., not all diagnoses carry equal risk) and differential risk within conditions (i.e., phenotypic variability imparts variable risk). The athlete presenting with aborted SCD who has severe manifestations of underlying disease almost certainly does not have the same prognosis as the asymptomatic athlete with a mild disease phenotype that is detected during preparticipation screening. Educating patients about differential risk and working with them to establish the clearest picture of their personal risk profile represents a key component of SDM.

Second, the benefits of sport participation cannot be ignored. In our clinical practices, we routinely see the adverse impacts of sport disqualification among patients both appropriately and perhaps unnecessarily withheld from sport. These outcomes include but are not limited to sedentary living with corollary weight gain and the acquisition of traditional cardiovascular risk factors, impaired school performance, social isolation, depression, anxiety, and in rare but severe cases, both suicidal tendencies and suicide itself. The desire to avoid such outcomes should not dictate eligibility recommendations but cannot be ignored during the process.

Finally, risk may be modifiable. Mounting clinical experience coupled with observational case series suggest that contemporary CVD management may lead to acceptable levels of risk during continued participation. It is important to note that a series of athlete deaths represent individuals who had not been previously diagnosed. Published experiences with return-to-play for patients diagnosed with CVD and appropriately treated, including following placement of an implantable cardiac defibrillator (5,6), and comprehensive management of patients with genetic long QT syndrome (7,8,13), which did not document adverse outcomes in these appropriately treated patients suggest that athletes who have been diagnosed, and appropriately risk-stratified and treated, may have a different risk profile than the undiagnosed patient.

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SDM: Ethical Considerations

The process of SDM for the purpose of determining competitive sports eligibility among athletes with CVD can and should be considered within the framework of fundamental medical ethics. Application of the key ethical principles that buttress modern medicine highlights the importance and inherent challenges in SDM. Autonomy, the right of patients to make decisions about their medical care, is the most straightforward principle to apply. Enabling the athlete with newly diagnosed CVD to participate in and to ultimately assume an element of responsibility for his or her clinical management represents a prime example of respect for autonomy. It must be emphasized that respect for autonomy does not remove or reduce the role of the clinician in formulating recommendations based on individual patient characteristics. On the contrary, it requires a higher level of clinician investment than that required for paternalistic approaches to patient care. Clinicians invariably best understand the medical facts and uncertainties associated with specific forms of CVD and will thus be optimally positioned to provide recommendations that integrate science, experience, and personal opinion. Additionally, clinicians who elect to use an SDM approach to eligibility decisions assume a moral imperative to educate patients and their families sufficiently to be rational agents capable of making informed and voluntary decisions (14). This is an extremely time-consuming investment and one that requires the clinician to explain both what is known and what is unknown about risks of and benefits of competitive sport participation following a diagnosis of a CVD in general and an SCD-predisposing CVD in particular.

The principles of nonmaleficence, the requirement that clinicians do not intentionally create a harm or injury to the patient either through acts of commission or omission, and beneficence, the principle that clinicians have a duty to take positive steps to prevent and to remove harm from the patient, are somewhat more complex and may appear to be at odds with the principle of autonomy. However, both principles can and should be considered when engaging in eligibility decision making with competitive athletes. It can be argued rationally that beneficence should dictate the immediate disqualification of any athlete with any CVD deemed to elevate risk (to any degree) of death or adverse events during sport. However, a categorically restrictive strategy may be at odds with the principle of nonmaleficence as restriction from sport has the potential to do harm. Prohibition of sport for a competitive athlete introduces substantive and tangible risk of adverse outcomes including loss of personal identity, social isolation, depression, grief, suicide, and relegation to a sedentary lifestyle with attendant long-term adverse health implications of unintended obesity.

Striking the appropriate balance between beneficence and nonmaleficence is challenging in clinical practice as the full scope of the risks and benefits for both sport abstinence and continued sport participation cannot be accurately quantified based on major gaps in clinical knowledge. While emerging data have begun to enable more meaningful discussions about the risk of sport for specific clinical situations, this is currently a largely qualitative process that relies heavily on clinician experience rather than rigorous science. Further delineation of the risks and benefits related both to continued participation versus disqualification/abstinence among athletes with CVD represents a critically important area of future research.

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SDM: A Framework for Implementation

The application of SDM in clinical practice has been described for multiple conditions including hemodialysis in patients with end-stage renal disease (15), ventricular support devices in patients with advanced/medically refractory heart failure (16), and end-of-life decision making in patients with terminal cancer (17). To date, there is no single optimal model that spans the breadth of all clinical scenarios but several fundamental attributes of SDM appear to be universally applicable. A stepwise approach to SDM for competitive athletes with CVD is delineated below (Fig.). It is worth emphasizing that effective SDM is a time- and labor-intensive process that cannot be accomplished in a single clinical interaction.

Figure

Figure

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Confirmation of diagnostic accuracy, risk stratification, and treatment

The first step in the SDM process is the confirmation of diagnostic accuracy. Many of the CVD processes that lead to consideration of competitive sports disqualification can be challenging to diagnose with complete certainty. Physiologic cardiovascular adaptations among athletes often mimic common forms of CVD and the differentiation of physiology from pathology is often a process that requires a comprehensive multimodality evaluation in a tertiary or quaternary care environment. We encourage all athletes with newly diagnosed CVD and the clinicians that care for them to seek formal opinions from cardiovascular specialists with sports cardiology expertise and experience in differentiating disease from adaptive physiology.

Following confirmation of a CVD diagnosis, risk stratification and the development of a treatment plan are essential. Risk stratification procedures are disease-specific and should be conducted by a CV specialist with expertise in the pathophysiology, clinical risk determinants, and sport-specific exercise physiology relevant to the individual athletes. At present, risk stratification for athletes with CVD includes adherence to guidelines designed for use in the general public and in most cases, additional measures including comprehensive sport-specific exercise testing. Treatment planning involves a determination of the roles of pharmacotherapy, catheter or surgical intervention, and the value of an internal defibrillator. This process must be individualized on an athlete-by-athlete basis and should be completed prior to return to competitive athletics.

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Patient education

When a CVD with potential risk of adverse outcomes during sport, including the possibility of SCD, is confirmed, the next step is comprehensive individualized education. Patient-athletes and their families are entitled to teaching regarding the known characteristics of pathogenesis, potential therapeutic options, and the risks and benefits, both known and unknown, of continued participation in competitive athletics. The overseeing cardiovascular clinician should be responsible for initiating this process but may be supported by ancillary staff and/or the use of educational material that can be reviewed outside the office setting. An important component of this education process is to review the recommendations as delineated in the 2015 AHA/ACC Scientific Statement about sports eligibility. This is relevant in situations where the document provides the flexibility of Class I/II recommendations and also in situations where class III recommendations regarding eligibility are present. Athletes should be informed about the available data relevant to their diagnosis, informed about areas lacking adequate data, and educated about the concept of expert opinion versus data driven guidelines as they pertain to return-to-play decisions.

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Determination of patient preferences and values

Education regarding the medical aspects of a cardiovascular diagnosis should be followed by elucidation of patient-athlete/family preferences and values. This is among the most challenging but important aspects of SDM as it pushes the clinician to move beyond routine discussion about medical facts and into the realm of interpersonal emotions and beliefs. Central to this discussion is the attempt to determine the past, present, and future role(s) of competitive athletics in the life of the afflicted athlete. This helps the specialist and the family gauge whether continued sports participation is deemed to be rather “optional” or more like “oxygen” for the athlete and his/her family. There is no single optimal template for this conversation but developing an understanding of the full person to include delineation of prediagnosis athletic aspirations, discussion of nonathletic pursuits and goals, confirmation of religious affiliations or alternative belief and support structures, and the identification of specific people that the athlete considers central to their decision making structure are typical components. When conducted effectively, this dialogue helps the athlete frame the role of competitive athletics in his or her life and helps the clinician gauge the individual athlete’s level of insight. Whenever possible, we advocate for the introduction of a period for the athlete and his or her family to process this conversation prior to proceeding to the decision discussion.

Helping a patient/family think about their own preferences and values regarding risk is a second part of this discussion. While in most cases the physician cannot put a firm number on risk of SCD with continued athletic participation, giving patients and families a framework to think about their own tolerance for risk also can aid the decision making process. Do they approach life so as to minimize risk in general, or do they see risk as inherent?

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Synthesis of the patient/clinician decision

Following confirmation of diagnosis, prognosis, and establishment of a tailored treatment program, combined with comprehensive education, and elucidation of preferences and values, it is appropriate for the athlete, his/her family, and the clinician to arrive at a shared decision about whether to continue/resume competitive athletics. This step involves the clinician providing his or her recommendation based on a synthesis of medical facts, clinical uncertainties, and the individual patient and family similarly sharing his or her preference regarding future competitive athletics. We routinely begin this discussion by confirming that the patient and his or her family have acquired a sound understanding of the key medical facts and relevant uncertainties. It is valuable during this phase of the discussion to reiterate contemporary clinical limitations regarding absolute risk prediction. Theoretically, the risk of adverse outcomes during exercise is dictated by CVD severity, the efficacy in some cases of disease-directed therapy, and the physiology of superimposed high-intensity/high-volume exercise. Unfortunately, none of these components of risk are sufficiently well understood in isolation, let alone in combination, to definitively quantify risk at the individual patient level for competitive athletes. We encourage careful documentation of this discussion, including both the patient’s and doctor’s contribution to the decision, including any disagreement in situations where this exists.

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Stakeholder engagement

Regardless of whether an athlete with CVD chooses to pursue or abstain from continued competitive sports participation, engagement of all stakeholders including parents, schools, and sports organizations with relevance to the decision is essential. The primary emphasis of stakeholder engagement is to build a collaborative care team around the athlete with CVD by clarifying the medical facts, confirming the athlete’s desire to continue competitive sports participation following an understanding of the inherent risks and benefits, and to ensure the presence of an emergency action plan.

Parents and/or legal guardians are critical stakeholders. Medical legal convention dictates that athletes younger than 18 years have parental oversight during all clinical encounters and thus the parents of minors will have been involved since the beginning of this process. For young athletes older than 17 years, we still strongly encourage the inclusion of their parents or previous legal guardians, such as grandparents, in this process. While this has the potential to introduce complexities stemming from parental agendas, it is almost always in the athlete’s long-term interest to have parental support during and after this decision making process.

Athletes with a newly established cardiovascular diagnosis who elect to pursue continued competitive sports participation must understand that this is often an extremely complex process that extends far beyond the examination room and the patient-physician relationship. The complexity of this process varies considerably but in general, increases in parallel with the level of competition. At the high school, collegiate, and professional levels of sport, an official team physician will play an instrumental role in this process. We routinely educate athletes with CVD about the team physician’s role as one of the final arbiters of all return-to-play decisions. Team physicians who oversee the care and future eligibility of an athlete with CVD are infrequently cardiovascular specialists. Thus, they will be optimally effective when they partner with a cardiovascular consultant(s) with both expertise in sports cardiology and the specific CVD afflicting his or her athlete.

Working collaboratively, team physicians and cardiovascular specialists can then effectively partner in the engagement of additional stakeholders, including athletic trainers, athletic and educational administrators, coaches, player agents, and attorneys. This process can and should be driven by the athlete and should include the athlete at every step. The goal of this engagement is to ensure that the desire of the well-informed athlete is in alignment with, or can reach alignment with, the team or organization with whom they affiliate. Concerns about medical legal liability are justifiable and one prior court case provides precedent for educational institutions to make decisions about sport eligibility that are at odds with an athlete’s preference, based on the right of the school to use expert consultants and published guidelines (18). How the courts will view the rights of the school and athlete in return-to-play decision in the new era of “Class II” recommendations, which include phrasing such as “is reasonable” or “may be considered” has not yet been tested. In our collective experience, stakeholder engagement is often challenging due to competing agendas. Consequently, the outcome, specifically whether an athlete is disqualified or permitted to compete, is unpredictable and highly variable especially at/beyond the division I university level (13).

Stakeholder engagement is equally important for athletes with CVD who elect to discontinue competitive sport participation. Sudden discontinuation of sport is a life-changing event that may place the athlete at risk for the traditional grief process during which they may benefit from clinical support (19). This can and should begin with team physicians, cardiovascular specialists, and athletic trainers but is often optimized by the inclusion of experienced mental health professionals with expertise in sports and exercise. When appropriate and condoned by the athlete, we routinely engage educators from the athlete’s school environment, including coaches, teachers, and school administrators as they are positioned optimally to assist with the potential downstream repercussions including changes in social connectivity and impaired academic performance. Athletes who elect to discontinue competitive sport participation following a cardiovascular diagnosis should be encouraged to maintain a physically active lifestyle. Shifting focus from competitive athletics to a physically active lifestyle geared toward health and longevity is an essential component of long-term care of this patient population.

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Longitudinal care

Longitudinal care is essential for all athletes with established CVD regardless of whether or not they continue to participate in competitive athletics. In all cases, surveillance for disease progression with an emphasis on the identification of characteristics that suggest changes in risk should be conducted. The specifics of longitudinal risk stratification including the choice of serial testing and the time interval separating assessments should, at the least, adhere to current clinical practice guidelines, and are often further individualized based on patient/clinician preferences.

Among athletes that elect to continue competitive sports and who are supported to do so by their institutions or teams, several specific considerations are warranted. First, appropriate precautions as suggested by the sports-specific and disease-specific guidelines need to be put into place, such as maintaining hydration, avoiding disease-specific adverse drugs, and for some conditions, carrying a personal AED. All members of the care team, including coaches and trainers, require education around these issues.

Next, we routinely emphasize the importance of acknowledging and reporting the development of potentially disease-related symptoms. Among asymptomatic athletes with CVD, new-onset symptoms, particularly those that occur or are exacerbated by physical exertion, should prompt immediate removal from training and competition pending further assessment. This assessment, conducted by a cardiovascular specialist, should include a reappraisal of risks and benefits of sport participation and a reaffirmation that continued participation is both desirable by the patient and deemed appropriate by the clinician. Second, we emphasize both to the athlete and their stakeholders, the critical importance of an emergency action plan. In most cases, standard emergency action planning will be sufficient for athletes with established CVD. Effective planning includes training coaches and athletes in cardiopulmonary resuscitation, ensuring immediate access to an automated external defibrillator at all practices and competition, and confirming timely access to emergency medical personnel with expertise in advanced cardiac life support and rapid hospital transport.

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Conclusions

Uniform and mandatory disqualification of athletes with CVD is often unnecessary, has the potential to do harm, and is no longer supported by the most recent professional practice recommendations. Evolving observational literature coupled with mounting experience within the sports cardiology community are leading to a more patient-centered/SDM approach to determining sports eligibility among young competitive athletes. The shift away from conservative paternalistic clinical oversight to a model in which athletes and clinicians share responsibility for management decisions simultaneously creates opportunities for flexible, individualized choice while introducing additional complexities to the process compared to previous “if in doubt, kick them out” approaches. The clinical implications and ramifications of SDM to athletes and their families with SCD-predisposing CVD remain largely unexplored. In this era of change, we in the cardiology and sports medicine communities have a moral imperative to work together to further research into the long-term health and wellness of athletes who continue to play following a cardiovascular diagnosis.

The authors declare no conflict of interest and do not have any financial disclosures.

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