Challenges of Shared Decision Making in Adult and Pediatric Athletes
- Shared decision making is challenging with young athletes.
- Young athletes are still capable of mature thought processing and participating in shared decision making.
Risk assessment of sudden cardiac death (SCD) is of crucial importance for competitive athletes who regularly push their bodies beyond typical limits. Although we have made gains in our ability to assess cardiac risk in athletes, it is still difficult to predict who will or will not suffer SCD during exercise. Even with more research and data, this uncertainty will always be present due to the wide ranges of cardiac diseases, athlete phenotypes, and sports with variable degrees of intensity. Because of this uncertainty, we have embraced shared decision making (SDM) as a tool to educate the athlete on known or perceived risks and to determine his or her priorities and values. The goal is to come to a mutually agreed upon decision regarding sports participation or non-participation. Safety plans are also essential as a preventative and preparatory measure to minimize risk (i.e., medication compliance, presence of automated external defibrillators, trained bystanders in cardiopulmonary resuscitation [CPR], etc.) These plans should be consistently reevaluated.
Kim and Dickert recently reviewed the historical context of SDM and summarized the key points and pitfalls.1 They noted several challenges involved in this process upon which we hope to elaborate in this commentary, particularly those which are encountered with pediatric athlete-patients. We will examine the challenges to each stakeholder: the cardiologist, the athlete, and, in pediatric cases, the legal guardian.
The cardiologist bears the responsibility of education and appropriate engagement of the patient and the other team members. Those who engage in SDM know that it takes more clinic time than would a paternalistic mandate. Rushing the process can lead to a decision made without the athlete understanding the level of risk and commitment to the process, potentially placing them in a dangerous situation. Cardiologists should educate themselves on the most up to date research in the risks associated with specific disease entities, and, when necessary, refer to a more qualified specialist to further engage the athlete. Incomplete or outdated physician knowledge of the risks of a specific disease entity can negatively impact the athlete with over-restriction of play or, conversely, underappreciation of risk. Kim and Dickert also noted, "It is important to emphasize that SDM does not equate to passive deference. Sports cardiologists must not abrogate the primary responsibility to provide evidence-based guidance, especially when risks are deemed significant and more assertive guidance is required."1
Critics of the use of SDM in specific disease entities have questioned whether a young athlete can be trusted to engage in SDM with appropriate maturity and insight. Maron et al. argued in a 2017 commentary that most young athletes would not recognize their vulnerability, stating: "when given a libertarian choice through SDM they usually elect to remain in the sports arena, even with a diagnosis of cardiovascular disease".2 Conversely, many who engage in SDM with young athletes have noted that they "are capable of mature processing sufficient to engage" in SDM,3 and some young athletes may elect to stop playing, even when their physician is comfortable with their continued participation. Non-participation and restriction carry with them the potential for negative psychological consequences.4
Specific to the pediatric population, counseling and discussion of risk should be tailored to the athlete's developmental and educational stage. For example, a 12-year-old basketball player would likely not be able to understand incidences in the form of "deaths per patient-years" but may understand the following analogy: "We can compare risk to jumping off different rungs of a ladder. Whether you climb 3 feet or 6 feet high, your risk of injuring yourself is low, but the risk increases the higher you climb on the ladder. Your heart disease places you higher on the ladder. We can develop a safety plan to try to prevent injury and to take care of injury if it does happen, but the risk will still be there." Using analogies like this can ensure effective communication and involvement of younger patients.
Athletes are charged with the weight of adherence to the plans outlined by their physician. We ask them to be compliant with medications, conscious of hydration and nutrition, communicative about their diagnosis and associated risks, honest with symptoms that may arise, and adherent to an emergency action plan. While there are others to help them (family, teams, trainers, school, etc.), the primary onus is on the athlete to be compliant with the safety plan, and their noncompliance compromises SDM. Sometimes this can be too much for a young athlete, particularly given the changes to identity and expectations after being diagnosed with a cardiovascular disease. If non-participation is required or chosen, athletes need to be cognizant of the physical and psychological impact that this may have. Athletes should be encouraged to seek new physical activities or other opportunities in these circumstances and behavioral health consultation should be made available.
In pediatric athletes <18 years old, the guardian has the legal authority to permit or withhold the athlete from competitive sport participation, but the athlete should also provide assent for any decision.5 In order to perform SDM well, the cardiologist must engage and educate the athlete and family, recognizing that SDM need not be an all-or-nothing approach. The athlete's determined eligibility through SDM can be titrated to fit the family dynamic. At times, the guardian may have stronger feelings or different motivations regarding the athlete's sports participation than the athlete themselves. There may even be disagreement between parents or guardians themselves. This is typically resolved with a follow-up visit later after they have had time to discuss further amongst themselves. The triad represented by the physician, guardian, and athlete must mutually accept the risks of sports participation or non-participation. Similar to the athlete, the guardian needs to commit to the safety plan if participation is continued.
Effective SDM can be compromised by lack of physician preparation and time commitment, patient immaturity, ineffective communication, lack of understanding or support from third parties, and noncompliance with agreed upon safety plans. In addition to taking on the risks of participation, there are risks of non-participation that should be considered, such as worsening cardiometabolic profiles, poor academic performance, and mental health disorders. As Kim and Dickert concluded: "clarifying communication and decision-making challenges in athletes and identifying critical biases among practitioners can facilitate development of clinical tools that can be used by clinicians working through this model... we must now do the work to advance the quality of SDM for sports eligibility."1
- Kim JH, Dickert NW. Athletes with cardiovascular disease and competitive sports eligibility. JAMA Cardiol 2022;7:663-64.
- Maron BJ, Nishimura RA, Maron MS. Shared decision-making in HCM. Nat Rev Cardiol 2017;14:125-26.
- Hammond BH, Aziz PF, Phelan D. Importance of shared decision making for return to play after COVID-19. Circulation 2021:143:1733-34.
- Luiten RC, Ormond K, Post L, Asif IM, Wheeler MT, Caleshu C. Exercise restrictions trigger psychological difficulty in active and athletic adults with hypertrophic cardiomyopathy. Open Heart 2016;3:1-7.
- Sawyer K, Rosenberg AR. How should adolescent health decision-making authority be shared? AMA J Ethics 2020;22:E372-379.
Clinical Topics: Arrhythmias and Clinical EP, Cardiovascular Care Team, Diabetes and Cardiometabolic Disease, Prevention, Sports and Exercise Cardiology, Implantable Devices, SCD/Ventricular Arrhythmias, Exercise
Keywords: Sports, Youth Sports, Athletes, Cardiovascular Diseases, Decision Making, Shared, Follow-Up Studies, Mental Health, Death, Sudden, Cardiac, Risk Assessment, Cardiopulmonary Resuscitation, Defibrillators, Exercise, Medication Adherence, Heart Diseases, Pediatrics
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