Where should I refer my patient for comprehensive care?

Referral to Multidisciplinary HCM Centers for Comprehensive Care

For patients with hypertrophic cardiomyopathy (HCM), referral to a comprehensive or primary HCM center is strongly recommended when septal reduction therapy (SRT) is indicated, and is reasonable for complex disease-related management decisions including genetic counseling, ICD decision-making, advanced treatment planning, and complex arrhythmia management. 1

When Referral is Mandatory (Class I Recommendation)

Patients requiring septal reduction therapy (SRT) must be referred to experienced HCM centers (comprehensive or primary) with demonstrated excellence in clinical outcomes. 1 This is non-negotiable because:

• Centers with limited experience and low procedural volume have significantly increased mortality and morbidity rates 1
• High-volume centers achieve 30-day mortality ≤1% for both myectomy and alcohol septal ablation 1
• Experienced centers maintain complete heart block rates ≤5% for myectomy and ≤10% for ablation 1
• Repeat procedure rates at expert centers are ≤3% for myectomy versus ≤10% for ablation 1

When Referral is Reasonable (Class IIa Recommendation)

Consultation with or referral to an HCM center is reasonable for complex disease-related management decisions including: 1

Diagnostic Complexity

• Confirming uncertain HCM diagnoses 1
• Distinguishing HCM from other causes of left ventricular hypertrophy 1

Genetic Services

• Genetic counseling and testing for patients and families 1
• Family screening coordination 1

Advanced Treatment Decisions

• Particularly challenging primary prevention ICD decision-making 1
• Complex invasive SRT planning (especially when anatomically challenging) 1
• Catheter ablation for ventricular and complex atrial tachyarrhythmias 1
• Advanced heart failure therapies including transplant evaluation 1

Lifestyle Counseling

• Counseling regarding participation in competitive sports or high-intensity exercise 1
• Activity and lifestyle modification guidance 1

Critical Pitfall to Avoid

If your center offers only one SRT option (myectomy OR alcohol ablation), patients must be fully informed of both procedures' pros and cons, and offered referral to a comprehensive center that provides all treatment options. 1 This ensures appropriate shared decision-making and prevents patients from receiving a procedure based solely on local availability rather than optimal individual suitability.

Role of Community Cardiologists

Cardiologists outside HCM centers maintain critical roles in: 1

• Providing ready access for initial and surveillance testing 1
• Implementing treatment recommendations from HCM centers 1
• Rapid assessment when disease course changes 1
• Longitudinal monitoring between HCM center visits 1

Expected Communication

HCM centers should provide direct communication along established referral lines with referring providers to improve quality of care in all settings and meet individual patient needs. 1 This bidirectional communication ensures coordinated care delivery across the spectrum of expertise.

Shared Decision-Making Framework

Shared decision-making is mandatory when developing care plans for HCM patients, including full disclosure of risks, benefits, and anticipated outcomes of all options, with opportunity for patients and caregivers to express goals and concerns. 1 This approach improves confidence in clinical decisions and health outcomes, and is particularly critical for decisions regarding genetic evaluation, ICD implantation, advanced LVOTO therapies, and exercise participation. 1