Coordinating care for Huntington’s disease

Huntington's disease (HD) is a genetic neurodegenerative disorder that affects movement, thinking, memory, emotions, and behavior. HD is caused by a mutation in the HTT gene that results in progressive damage to nerve cells in the brain.

People with HD experience a combination of symptoms that can affect multiple aspects of health and functioning. These symptoms can include:

• Motor symptoms such as involuntary jerking movements (chorea), muscle rigidity, slow or abnormal eye movements, difficulty with balance and coordination, impaired gait, and difficulty with speech and swallowing.
• Cognitive symptoms such as difficulty organizing tasks, problems with focus and concentration, lack of impulse control, difficulty learning new information, and slowed
• Psychiatric symptoms such as depression, anxiety, irritability, social withdrawal, and changes in personality or behavior.

Treatment for HD

There is no cure for Huntington's disease. Treatment focuses on managing symptoms and maintaining quality of life. A treatment plan may include medications to help control involuntary movements, psychiatric symptoms, and other complications. Physical therapy, occupational therapy, and speech therapy are often a part of a treatment plan. People with HD are also encouraged to incorporate strategies to help with organization, memory, and stress.

Care coordination is essential

While treatment for HD is typically overseen by a neurologist treatment will most likely involve a multidisciplinary team of healthcare providers.

Other members of a treatment team can include primary care providers, mental health professionals, genetic counselors, social workers, physical therapists, occupational therapists, speech-language pathologists, and nutritionists.

It's important that the different members of an HD treatment team have open lines of communication with one another. This is called care coordination.

Care coordination can be a challenge for people living with HD and their caregivers. Here are a few strategies that can help.

Work with a specialized team

One of the best approaches is to work with a multidisciplinary team that specializes in the diagnosis and treatment of HD. A specialized team will be based at a single location, such as a hospital or medical center with a Huntington's disease clinic. This will make coordinating care between healthcare providers easier and more straightforward.

However, the healthcare providers a person works with are often dictated by what healthcare providers are available where they live. Not everyone will have access to this type of specialized healthcare team.

Designate a point person

Consider designating one healthcare provider as your "point person." This provider will maintain an overview of the different aspects of treatment and care for HD, including diagnosis, medical history, monitoring of symptoms, treatments prescribed, and contact information for your other healthcare providers. In many cases, this will be a neurologist.

Keep a personal health record

A personal health record is a file that contains all information related to your health. Maintaining this file helps ensure that this information is available—or can easily be made available—to all your healthcare providers. A personal health record should contain:

• Test results, including genetic testing results, brain imaging studies (MRI or CT scans), and results from neurologic exams
• Evaluations and workups from specialists
• Treatment records, including medications you've been prescribed and therapies you've received
• 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

Your personal health record can also include your own notes from appointments, including questions you've asked your healthcare providers and information supplied by your healthcare providers.

Remember, HD requires individualized treatment and care. For questions about your diagnosis, symptoms, and treatment options, your healthcare providers will be your best source of information.