Coordinating care for hypertrophic cardiomyopathy (HCM)

Hypertrophic cardiomyopathy (HCM) is a disorder characterized by abnormal thickening of the heart muscle. In many cases, the cause of HCM is genetic, the result of genes inherited from a person’s biological parents. In many other cases, no cause can be identified.

The thickening of the heart muscle that occurs with HCM can interfere with how blood pumps out of the heart, forcing the heart to work harder. While the severity of HCM varies from person to person, HCM can lead to a variety of serious symptoms and complications—chest pain, irregular and rapid heartbeat (arrythmia), fatigue, fainting, heart failure, and sudden cardiac death can all occur as a result of HCM.

How HCM is treated and managed

Treatment can help manage symptoms, slow the progression of the disease, and reduce the risk of complications. Treatment for HCM will depend on a person’s symptoms, age, overall health, the risk of complications, and whether HCM is obstructive (interfering with blood flow) or nonobstructive (not interfering with blood flow).

Everyone with HCM will require regular monitoring and checkups, as well as patient education to better understand the condition, symptoms to watch for, and how to follow a heart-healthy lifestyle. All people with HCM should discuss exercise and activity recommendations and limitations with a healthcare provider. This is especially true for athletes with HCM.

Obstructive HCM is typically treated with medications to reduce symptoms, improve heart function, slow the progression of the disease, and reduce the risk of complications. Surgery is also needed in some cases, such as an implanted pacemaker or defibrillator, surgical treatments to remove or destroy thickened heart muscle, or surgical procedures to relieve obstruction.

The healthcare providers on your HCM team

People with HCM will often work with multiple healthcare providers. Treatment is typically overseen by a cardiologist, a medical doctor who specializes in the diagnosis and treatment of heart conditions. Other members of a care team may include:

• Primary care provider
• Electrophysiologist (heart rhythm specialist)
• Cardiac surgeon
• Genetic counselor
• Pharmacist
• Nurses

Like other aspects of care for HCM, the members of a care team will vary from person to person, depending on an individual’s needs.

Coordinating care among your care team

When working with multiple healthcare providers, it’s important that the different members of your team are in communication with one another. This is referred to as “care coordination.”

Here are a few strategies that can help:

Work with a specialized team

If possible, work with a multidisciplinary team that specializes in hypertrophic cardiomyopathy, one that is based at a single location, such as a hospital or medical center.

However, the healthcare providers a person works with is dictated by what healthcare providers are located in their area. If you do not have access to a center that specializes in HCM, try to work with a cardiology department or medical center with multiple providers that you may need to work with.

Designate a point person

Consider designating one healthcare provider as your "point person." This provider should maintain an overview of the different aspects of your HCM care—information about diagnosis, treatment, and contact information for the different providers you’ve worked with. This may be your cardiologist or your primary care provider.

Keep a personal health record

This is a file that includes all paperwork and documents related to HCM as well as other aspects of your health and healthcare. This file should contain:

• Test results, including results of tests like echocardiograms, electrocardiograms (ECGs), imaging tests, stress tests, and bloodwork
• Evaluations and workups from specialists
• Treatment records, including medications you've been prescribed and medical procedures
• Genetic testing results and family history information
• Contact information for all of your healthcare providers
• Insurance information
• Copies of bills, receipts, explanation of benefits documents, and other information related to the financial aspects of treatment

You can also include your own notes from appointments, including questions you've asked and information provided by healthcare providers. While this can seem like a lot of work, keeping this information organized can save you time when you need it—for example, when contacting your insurance company or when you need to see a different specialist.

Remember, treatment for HCM is individualized, and a healthcare provider will be your best source of information.

You are also an important source of information for your healthcare team. Tell your healthcare provider if you notice a change in how you feel. Be honest if something isn't working. Prepare for your appointments. Take an active role in your care and treatment decisions.