Coordinating care for neurofibromatosis type 1 (NF1)

Neurofibromatosis type 1 (NF1) is the most common form of neurofibromatosis (NF), a group of rare genetic disorders associated with the formation of tumors in the nervous system. The tumors caused by NF are typically non-cancerous, though they can become cancerous, and people with NF are at a higher risk of numerous types of cancers and complications.

Symptoms of NF1 typically begin in childhood and can change as a person ages. NF1 can cause changes in skin pigmentation and small tumors on or under the skin, tumors on the optic nerve, and problems with growth and development.

About half of people with NF1 develop plexiform neurofibromas. These are larger tumors that involve multiple nerves and surrounding tissues. Plexiform neurofibromas can cause a variety of medical problems, including pain, problems with mobility, vision loss, hearing loss, and problems with blood pressure.

NF1 is a complex condition that requires a multidisciplinary approach to treatment. This means that a person with NF1 will need to work with a team of healthcare providers with different specialties—neurology, surgery, oncology, genetics, and numerous others. NF1 affects different people in different ways, which means one person’s treatment needs will be different from the next.

Treatment will typically be overseen by an NF specialist, a healthcare provider (usually a neurologist) with specialized training in the diagnosis, treatment, and management of NF, and how the different elements of treatment work together.

Coordinating care with 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

When treating a rare disorder that requires specialized care, one of the best approaches is to work with a team based at a center that specializes in the care of that disorder. This will mean the different healthcare providers you need to work with will be part of the same team and will be able to coordinate with one another more easily.

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 all the time. Also, a person may require a type of care that is not provided at a specialized center, and many need to work with additional healthcare providers.

Here are two additional strategies that can help with care coordination.

Designate a point person

If you are working with multiple providers at multiple locations, it helps to designate one healthcare provider as your "point person." This may be a neurologist or primary care provider based in your area that coordinates and communicates with an NF specialist.

This provider should maintain an overview of the different aspects of your care, including information about your diagnosis, treatment, and contact information for different providers you’re working with or that you have worked with in the past.

Keep a personal health record

This is a file that includes all paperwork and documents related to NF1 as well as other aspects of your health and healthcare. This file should contain:

• Test results, including results from physical exams, hearing and vision exams, imaging tests, medical history, and family medical history
• 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 take time and effort, it can also save you time and effort—for example, if you need to contact your insurance company or if you are referred to a specialist.