Hypertrophic Cardiomyopathy: Updates Through the Lens of Sports Cardiology

Abstract Purpose of review This review will summarize the distinction between hypertrophic cardiomyopathy (HCM) and exercise-induced cardiac remodeling (EICR), describe treatments of particular relevance to athletes with HCM, and highlight the evolution of recommendations for exercise and competitive sport participation relevant to individuals with HCM. Recent findings Whereas prior guidelines have excluded individuals with HCM from more than mild-intensity exercise, recent data show that moderate-intensity exercise improves functional capacity and indices of cardiac function and continuation of competitive sports may not be associated with worse outcomes. Moreover, recent studies of athletes with implantable cardioverter defibrillators (ICDs) demonstrated a safer profile than previously understood. In this context, the updated American Heart Association/American College of Cardiology (AHA/ACC) and European Society of Cardiology (ESC) HCM guidelines have increased focus on shared decision-making and liberalized restrictions on exercise and sport participation among individuals with HCM. Summary New data demonstrating the safety of exercise in individuals with HCM and in athletes with ICDs, in addition to a focus on shared decision-making, have led to the most updated guidelines easing restrictions on exercise and competitive athletics in this population. Further athlete-specific studies of HCM, especially in the context of emerging therapies such as mavacamten, are important to inform accurate risk stratification and eligibility recommendations.

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Applying Shared Decision Making to Sports Participation for a Patient With Hypertrophic Cardiomyopathy

JACC: Case Reports ◽

10.1016/j.jaccas.2020.11.005 ◽

2020 ◽

Author(s):

Alejandro E. de Feria ◽

Kimberly Y. Lin ◽

Sharlene M. Day

Keyword(s):

Decision Making ◽

Hypertrophic Cardiomyopathy ◽

Shared Decision Making ◽

Sports Participation ◽

Shared Decision

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Physicians’ perceptions of shared decision‐making for implantable cardioverter‐defibrillators: Results of a physician survey

Journal of Cardiovascular Electrophysiology ◽

10.1111/jce.14178 ◽

2019 ◽

Vol 30 (11) ◽

pp. 2420-2426 ◽

Cited By ~ 1

Author(s):

Fatima Ali‐Ahmed ◽

Daniel Matlock ◽

Emily P. Zeitler ◽

Kevin L. Thomas ◽

David E. Haines ◽

...

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Implantable Cardioverter Defibrillators ◽

Shared Decision ◽

Physician Survey ◽

Cardioverter Defibrillators

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Downgrade of cardiac defibrillator devices to pacemakers in elderly heart failure patients: clinical considerations and the importance of shared decision-making

Netherlands Heart Journal ◽

10.1007/s12471-021-01555-w ◽

2021 ◽

Vol 29 (5) ◽

pp. 243-252

Author(s):

H. F. Groenveld ◽

J. E. Coster ◽

D. J. van Veldhuisen ◽

M. Rienstra ◽

Y. Blaauw ◽

...

Keyword(s):

Heart Failure ◽

Decision Making ◽

Elderly Patients ◽

Shared Decision Making ◽

Large Scale ◽

Clinical Decision Making ◽

Clinical Decision ◽

Short Review ◽

Implantable Cardioverter Defibrillators ◽

Shared Decision

AbstractImplantable cardioverter defibrillators are implanted on a large scale in patients with heart failure (HF) for the prevention of sudden cardiac death. There are different scenarios in which defibrillator therapy is no longer desired or indicated, and this is occurring increasingly in elderly patients. Usually device therapy is continued until the device has reached battery depletion. At that time, the decision needs to be made to either replace it or to downgrade to a pacing-only device. This decision is dependent on many factors, including the vitality of the patient and his/her preferences, but may also be influenced by changes in recommendations in guidelines. In the last few years, there has been an increased awareness that discussions around these decisions are important and useful. Advanced care planning and shared decision-making have become important and are increasingly recognised as such. In this short review we describe six elderly patients with HF, in whose cases we discussed these issues, and we aim to provide some scientific and ethical rationale for clinical decision-making in this context. Current guidelines advocate the discussion of end-of-life options at the time of device implantation, and physicians should realise that their choices influence patients’ options in this critical phase of their illness.

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Return to play with hypertrophic cardiomyopathy: are we moving too fast? A critical review

British Journal of Sports Medicine ◽

10.1136/bjsports-2020-102921 ◽

2021 ◽

pp. bjsports-2020-102921

Author(s):

Jonathan A Drezner ◽

Aneil Malhotra ◽

Jordan M Prutkin ◽

Michael Papadakis ◽

Kimberly G Harmon ◽

...

Keyword(s):

Decision Making ◽

Hypertrophic Cardiomyopathy ◽

Shared Decision Making ◽

Sports Participation ◽

American Football ◽

Return To Play ◽

Medical Decision ◽

Competitive Sports ◽

Shared Decision ◽

Young Athletes

The diagnosis of a potentially lethal cardiovascular disease in a young athlete presents a complex dilemma regarding athlete safety, patient autonomy, team or institutional risk tolerance and medical decision-making. Consensus cardiology recommendations previously supported the ‘blanket’ disqualification of athletes with hypertrophic cardiomyopathy (HCM) from competitive sport. More recently, epidemiological studies examining the relative contribution of HCM as a cause of sudden cardiac death (SCD) in young athletes and reports from small cohorts of older athletes with HCM that continue to exercise have fueled debate whether it is safe to play with HCM. Shared decision-making is endorsed within the sports cardiology community in which athletes can make an informed decision about treatment options and potentially elect to continue competitive sports participation. This review critically examines the available evidence relevant to sports eligibility decisions in young athletes diagnosed with HCM. Histopathologically, HCM presents an unstable myocardial substrate that is vulnerable to ventricular tachyarrhythmias during exercise. Studies support that young age and intense competitive sports are risk factors for SCD in patients with HCM. We provide an estimate of annual mortality based on our understanding of disease prevalence and the incidence of HCM-related SCD in different athlete populations. Adolescent and young adult male athletes and athletes participating in a higher risk sport such as basketball, soccer and American football exhibit a greater risk. This review explores the potential harms and benefits of sports disqualification in athletes with HCM and details the challenges and limitations of shared decision-making when all parties may not agree.

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Shared decision making in implantable cardioverter-defibrillator patients

European Heart Journal ◽

10.1093/ehjci/ehaa946.0782 ◽

2020 ◽

Vol 41 (Supplement_2) ◽

Author(s):

D Yilmaz ◽

A Egorova ◽

L.M.H Lensvelt ◽

L Van Erven

Keyword(s):

Decision Making ◽

Clinical Practice ◽

Shared Decision Making ◽

Decision Aid ◽

Decisional Conflict ◽

Categorical Variables ◽

Control Group ◽

Funding Source ◽

Implantable Cardioverter Defibrillators ◽

Shared Decision

Abstract Background Implantable cardioverter-defibrillators (ICD) are effective in the prevention of sudden cardiac death and treating life-threatening arrhythmias. As the number of older patients increases, the number of implanted devices does as well. Evidence for current guidelines is mostly derived from trials conducted decades ago, in selected patient groups. Communicating the risks and benefits of an ICD to patients can be challenging. Shared decision making with the use of a decision aid has proven to result in more active patient participation and improved outcomes in several fields. Purpose The aim of our study is to evaluate the effect of an ICD specific decision aid in clinical practice. Methods We developed an evidence based decision aid according to the Delphi method. The decision aid was tested in 6 Dutch centres within a stepped wedge clustered randomized trial. We compared pre-procedural counselling with and without the use of a decision aid. Level of shared decision making was measured with the SDM-Q-9 in patients and SDM-Q-doc in caregivers. Additionally, we measured decisional conflict in patients with the decisional conflict scale questionnaire (DCS). This includes a subscore on how informed patients deemed to be. We included a set of 4 knowledge questions in our questionnaire. Differences between scoresbetween groups were analysed using the Mann-Whitney U test or One-way ANOVA. For categorical variables, we used the Chi-square test or Fishers Exact test accordingly. Results In total, we retrieved questionnaires from 234 caregivers and 150 patients. The majority of the patients were male (75%) and the mean age was 70±9 years. Levels of shared decision making were marked high in all groups. With the use of a decision aid, caregivers experienced significantly more shared decision making (median 78 (IQR 62–84) versus 81 (IQR 71–87) in the decision aid group (p=0.002)). Patients reported low levels of decisional conflict in both groups. There were also no differences for the subscales of the DCS (median 17 (IQR 6–25) in the control group vs 14 (IQR 5–23) in the decision aid group (p>0.05)). Patients reported to be very well informed (DCS subscale score of 0 in the control group vs 8 with a decision aid, p<0.05), although they answered the knowledge quiz poorly in both settings, with only 1 patient (0.067%) answering all the four question correctly (p<0.05). Conclusions Patients and caregivers report high levels of shared decision making. This is likely due to a bias associated with the study design, in which all participating centres were required to conduct elaborate pre-implantation counselling with patients as standard care, which is different from current clinical practice. Despite the implications of an ICD procedure, there was no decisional conflict and patients report to be well informed. This is in spite of low scores on the knowledge quiz. This illustrates the phenomenon of the unconsciously uninformed patient. Funding Acknowledgement Type of funding source: Foundation. Main funding source(s): Federation of Medical Specialists (SKMS), Utrecht, The Netherlands

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Shared Decision-Making for Implantable Cardioverter-Defibrillators: Policy Goals, Metrics, and Challenges

The Journal of Law Medicine & Ethics ◽

10.1017/jme.2021.85 ◽

2021 ◽

Vol 49 (4) ◽

pp. 622-629

Author(s):

Birju R. Rao ◽

Faisal M. Merchant ◽

David H. Howard ◽

Daniel Matlock ◽

Neal W. Dickert

Keyword(s):

Decision Making ◽

Health Policy ◽

Shared Decision Making ◽

Implantable Cardioverter Defibrillators ◽

Shared Decision ◽

Policy Goals ◽

Core Elements ◽

Cardioverter Defibrillators

AbstractShared decision-making has become a new focus of health policy. Though its core elements are largely agreed upon, there is little consensus regarding which outcomes to prioritize for policy-mandated shared decision-making.

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Personalizing cholesterol treatment recommendations for primary cardiovascular disease prevention

Scientific Reports ◽

10.1038/s41598-021-03796-6 ◽

2022 ◽

Vol 12 (1) ◽

Author(s):

Ashish Sarraju ◽

Andrew Ward ◽

Jiang Li ◽

Areli Valencia ◽

Latha Palaniappan ◽

...

Keyword(s):

Cardiovascular Disease ◽

Decision Making ◽

Statin Therapy ◽

Shared Decision Making ◽

Real World ◽

Moderate Intensity ◽

Atherosclerotic Cardiovascular Disease ◽

Shared Decision ◽

Test Set ◽

Low Intensity

AbstractStatin therapy is the cornerstone of preventing atherosclerotic cardiovascular disease (ASCVD), primarily by reducing low density lipoprotein cholesterol (LDL-C) levels. Optimal statin therapy decisions rely on shared decision making and may be uncertain for a given patient. In areas of clinical uncertainty, personalized approaches based on real-world data may help inform treatment decisions. We sought to develop a personalized statin recommendation approach for primary ASCVD prevention based on historical real-world outcomes in similar patients. Our retrospective cohort included adults from a large Northern California electronic health record (EHR) aged 40–79 years with no prior cardiovascular disease or statin use. The cohort was split into training and test sets. Weighted-K-nearest-neighbor (wKNN) regression models were used to identify historical EHR patients similar to a candidate patient. We modeled four statin decisions for each patient: none, low-intensity, moderate-intensity, and high-intensity. For each candidate patient, the algorithm recommended the statin decision that was associated with the greatest percentage reduction in LDL-C after 1 year in similar patients. The overall cohort consisted of 50,576 patients (age 54.6 ± 9.8 years) with 55% female, 48% non-Hispanic White, 32% Asian, and 7.4% Hispanic patients. Among 8383 test-set patients, 52%, 44%, and 4% were recommended high-, moderate-, and low-intensity statins, respectively, for a maximum predicted average 1-yr LDL-C reduction of 16.9%, 20.4%, and 14.9%, in each group, respectively. Overall, using aggregate EHR data, a personalized statin recommendation approach identified the statin intensity associated with the greatest LDL-C reduction in historical patients similar to a candidate patient. Recommendations included low- or moderate-intensity statins for maximum LDL-C lowering in nearly half the test set, which is discordant with their expected guideline-based efficacy. A data-driven personalized statin recommendation approach may inform shared decision making in areas of uncertainty, and highlight unexpected efficacy-effectiveness gaps.

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The Role of Shared Decision-Making in Audiologic Rehabilitation

Perspectives on Aural Rehabilitation and Its Instrumentation ◽

10.1044/arri21.1.15 ◽

2014 ◽

Vol 21 (1) ◽

pp. 15-23 ◽

Cited By ~ 6

Author(s):

Helen Pryce ◽

Amanda Hall

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Behavior Changes ◽

Shared Decision ◽

Patient Centered ◽

Treatment Information ◽

Centered Care ◽

Potential Risks ◽

Audiologic Rehabilitation

Shared decision-making (SDM), a component of patient-centered care, is the process in which the clinician and patient both participate in decision-making about treatment; information is shared between the parties and both agree with the decision. Shared decision-making is appropriate for health care conditions in which there is more than one evidence-based treatment or management option that have different benefits and risks. The patient's involvement ensures that the decisions regarding treatment are sensitive to the patient's values and preferences. Audiologic rehabilitation requires substantial behavior changes on the part of patients and includes benefits to their communication as well as compromises and potential risks. This article identifies the importance of shared decision-making in audiologic rehabilitation and the changes required to implement it effectively.

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