Has something like this ever happened to you?
You: “I’d like to make an appointment to see my Parkinson’s doctor soon. I’m having some changes I need to discuss.”
Office: “Your doctor’s first available appointment is in three months. But I can get you in to see their nurse practitioner tomorrow. Would you like that?”
You: “Sure, I guess… What’s a nurse practitioner?”
Seeing a nurse practitioner (NP), physician assistant (PA) or other “advanced practice provider” (APP) — a licensed, non-physician health care provider — for Parkinson’s or another medical condition is becoming more common. You might encounter an APP in the doctor’s clinic, talk therapist’s office, hospital, emergency room, urgent care or physical rehab facility — anywhere medical care is provided. While they aren’t physicians, they can do many of the same medical activities.
So many people wonder how APPs differ from doctors, how they work with doctors and what their roles are on the care team. This can vary based on training path, state regulation, clinic or medical center structure or protocol, and individual background and experience.
To learn more about APPs and your Parkinson’s disease (PD) care team, we spoke with nurse practitioner Joan Miravite, DNP (doctor of nursing practice), assistant professor of neurology at the Icahn School of Medicine at Mount Sinai and director of interdisciplinary clinical care for movement disorders at Mount Sinai Beth Israel in New York City. Joan has more than two decades’ experience caring for people with Parkinson’s, and she specializes in deep brain stimulation (DBS) programming.
The Michael J. Fox Foundation (MJFF): When might someone with Parkinson’s see an APP?
Joan Miravite (JM): Many Parkinson’s practices have APPs on staff. You might learn this from their website or when booking an appointment, or your doctor might discuss or introduce an APP during your visit. Occasionally, it comes as an unwelcome surprise — a person doesn’t realize they are scheduled with an APP instead of their physician. If this happens, ask the provider to share their background and experience and describe how they work with your doctor. You might even ask if the doctor could pop by quickly.
When and how often you might see an APP depends on your preference, your Parkinson’s and the provider’s experience and independence. I, for example, can see both new and returning patients. That means I can diagnose, prescribe medication, order tests and referrals (to physical therapy, for example), program DBS and more. And I can see people both in person and via telemedicine.
A person could see me anytime, really — either when they are stable or have an urgent need. Stable means they are doing well overall, and we aren’t changing medications or making big adjustments. They might alternate visits between me and their movement disorder specialist, seeing one of us every three or six months. An urgent need could be when someone has falls or hallucinations or another big or sudden change. We might need to adjust medications or check for infection, which you can’t do over the phone. I typically have more flexibility in my schedule, and I’m not booked out months in advance, so I can see people sooner.
Because of my expertise, I also see people for DBS programming. In the first three to six months after DBS surgery, I am often the main provider, working to lower medications and raise stimulation. It can take several months to find the right balance. Once we do, they go back to their Parkinson’s doctor and I might see them every few months for a DBS check or sooner, of course, if things change. Seeing a nurse practitioner or other provider who is an expert DBS programmer is becoming more and more common, especially as there are more DBS systems and more ways to program.
MJFF: How does an APP work with a Parkinson’s doctor?
JM: We’re a team. We collaborate. I’m always communicating with a person’s doctor. But exactly how we work together looks different from person to person and place to place. Nurse practitioners, like me, may be able to practice on their own and write prescriptions independently. Physician assistants, on the other hand, typically work and prescribe medication only under a physician in most states — they operate under the supervision of that physician and within the scope of that physician’s medical license.
When I was starting out, I would see patients first, step out to discuss with their doctor, and then we’d all talk together. For people who get care at a medical center that educates doctors, this is just like seeing a neurology resident or movement disorder fellow before seeing your personal doctor. Now I see patients on my own. But I always update their doctor, through my written note or a chat, and ask questions if needed, especially when something is uncertain or if there are several options to consider.
MJFF: How does an APP differ from a Parkinson’s doctor?
JM: For starters, our training is different. NP and PA are both “master’s or doctorate level degrees” which means they require schooling (two to three years) after college and, in the case of NPs, nursing school. They also both require a certain level of direct clinical experience. Throughout training, NPs focus on one “population” — adults, children, family (babies through elderly adults) or another. PAs learn more “general” medicine concepts. But we all learn how to diagnose and manage, do a physical exam, interpret tests, counsel patients and work with other disciplines.
Typically, there is little or no neurology education during training. You might hear about Parkinson’s but not do a deep dive on the topic. For those of us who focus on neurology, our training is “on the job” — we learn with experience. (For me, that’s more than two decades of “training”!) This may start to change, though. There are more and more educational programs available to teach APPs about Parkinson’s. A few medical centers have piloted APP movement disorder “fellowships.” And there’s ongoing work to establish an APP movement disorders certification program.
MJFF: What can, and can’t APPs do in Parkinson’s care?
JM: With the appropriate experience and training (and if state laws and certification allow), we can prescribe medications; program DBS; do procedures like lumbar punctures, or spinal taps and manage Parkinson’s treatments that require pumps, like infused levodopa, or Duopa.
We cannot, generally, admit patients to the hospital. And some parts of Parkinson’s may be harder for APPs to manage long-term — hallucinations, complex medication regimens, psychiatric symptoms and more. In these cases, it may be best for a person and their family to work directly with their physician, at least until things settle, and/or involve other members of the medical care team.
MJFF: How can people with Parkinson’s best work with an APP?
JM: Much the same way you best work with your doctor. Make sure you are good partners who can have an open and honest conversation.
Ask questions, and make sure you understand and feel comfortable with the answers. Ask about their background and experience — how long have they been working with people who have Parkinson’s? Have they taken specialized educational courses in PD or undergone other training, like fellowship? How do visits typically work — will you see only the APP or both the APP and your doctor at each visit? How often will you see them versus your doctor?
If you feel you aren’t being heard or like you aren’t doing as well as you could be, ask for an appointment with your doctor. I’ve had patients say, “I think I need to see the doctor; I haven’t seen them in a while.” Or reach out directly to your physician. Advocate for yourself. (Or make sure a loved one does!) And, if a certain APP (or any provider for that matter) doesn’t feel like a good fit, speak up for yourself and request a change.
MJFF: How do APPs benefit the Parkinson’s care team?
JM: We can help by seeing more patients and reducing wait times. If I’m seeing one patient for every patient the doctor sees, that doubles the amount of people we can see in the same amount of time.
As a nurse by training, I personally do a lot of education, both in and outside of patient visits. I do support group presentations and educational sessions for both patients and clinicians. I teach patients about DBS. I do a lot of outreach about medication and exercise. Because of my holistic approach and background in family medicine, I also might focus more on nutrition and wellness as well as rounding out the whole medical team, not just the Parkinson’s team.
To learn more about the role of APPs on your personal care team, talk with your Parkinson’s doctor. You can also learn from the experiences of others living with Parkinson’s through MJFF’s online Parkinson’s Buddy Network. Sign up and connect today.