ARTICLE IN BRIEF
Working with a movement disorders specialist via telemedicine access, nurse practitioners are overseeing treatment and care for Parkinson's disease patients who would not otherwise have easy access to care.
More than 200 patients have benefitted from specialized expertise in Parkinson's disease care since a nurse-managed clinic in Delaware began treating neurology patients in 2014.
The University of Delaware (UD) Nurse Managed Primary Care Center launched the Parkinson's Clinic — staffed by nurse practitioners with telemedicine access to a movement disorders specialist in another state — because there was no specialty care in the state. Some patients with Parkinson's disease (PD) were traveling more than two hours one way to seek care in Philadelphia or Baltimore; others were being treated by a general neurologist or a family physician.
“There was a dire need to have access to specialty care,” said Ingrid Pretzer-Aboff, PhD, RN, a clinical nurse specialist who serves as the Parkinson's clinic's director.
Indeed, increasingly nurse practitioners are becoming involved in neurologic care, a need recognized by the AAN. Approximately 700 advanced practice providers (APPs) — including physician assistants, nurse practitioners, and clinical nurse specialists — have joined the AAN — a nearly fourfold increase since the Academy introduced membership options for APPs in 2014.
Dr. Pretzer-Aboff, a PD nurse scientist at UD, started the clinic after many patients and family members asked for her help in finding specialty care. Once the clinic was approved, she recruited Ray Dorsey, MD, a PD specialist and director of the Center for Human Experimental Therapeutics at University of Rochester Medical Center in New York, to work in the clinic via a telemedicine connection. She also arranged for the clinic's nurse practitioners to receive special training about PD and the wide range of support that can benefit patients.
“All the health care providers working in the program have specialty training and expertise in the nuances of Parkinson's disease,” Dr. Pretzer-Aboff said. “Otherwise, it would be the state of care where people want to help but don't really understand all the nuances and complexities of the disease.”
Indeed, approximately 10 percent of the patients who have sought treatment at the clinic did not actually have Parkinson's disease, she said. They had been diagnosed by health care providers who were not sufficiently trained in movement disorders.
The PD clinic provides many services — from speech therapy and support groups to physical therapy and nutritional guidance. While a movement disorder specialist focuses on optimizing medications and monitoring side effects, the APP takes a broader view of patient care, Dr. Pretzer-Aboff said. Patients and their caregivers have flocked to the clinic, and patient satisfaction scores are consistently high.
“There is so much more to Parkinson's care” than medication, she said. “We consider the non-motor symptoms, the psychological aspects, family stresses, and burdens. We want to know if the patients exercising and whether we can motivate them to exercise. Our multidisciplinary team approach allows us to consider a more holistic approach.”
Although the clinical model has not been replicated, the nurse-managed clinic provides a blueprint for extending access to specialty care to patients living in underserved parts of the country, said Gwyn M. Vernon, MSN, CRNP, RN, national director of the Edmond J. Safra Visiting Nurse Faculty Program at the Parkinson's Disease Foundation (PDF).
“When you look at who gets served by the major Parkinson's disease centers, it's only a fraction of the people who have Parkinson's because the centers tend to be at academic institutions in large cities,” she said. “Patients might have to travel hundreds of miles, and that is not feasible for all.”
TRAINING IN PD CARE
The University of Delaware Nurse Managed Primary Care Center is one of about 250 nurse-managed clinics around the country. Led by family and adult nurse practitioners, the center provides acute illness care, chronic disease management, physicals, and women's health services to University of Delaware employees and members of the general public. The center also offers nutrition counseling, health coaching, and exercise counseling services, as well as the only telemedicine-supported nurse-led Parkinson's disease clinic in the country.
All the nurse practitioners who work in the Parkinson's clinic received training through the Safra nurse program at PDF. The 40-hour program is designed to improve nursing care in Parkinson's disease by training nursing faculty so they can better educate their students. Dr. Pretzer-Aboff, who teaches in the program, asked Vernon to develop an “auditor” track for nurse practitioners who need specialized training about the disease.
“There was a big learning curve for me,” said Carolyn Haines, MSN, FNP-C, director of the nurse-managed primary care clinic, pointing out that most nurse practitioners do not have experience with or training in treating patients with PD.
As part of her training with the Safra program at PDF, Haines developed a presentation that is viewed by all the students that work at the UD clinic.
“It's about the disease and medications and how our clinic works,” she said. “It serves as an orientation for new students.”
HOW THE CLINIC WORKS
A nurse practitioner leads the Parkinson's clinic team, which includes Dr. Dorsey; a psychologist available via telemedicine connection; physical, occupational and speech therapists; a registered dietitian; an exercise physiologist; a patient care coordinator; support groups; and Dr. Pretzer-Aboff's research team.
Dr. Dorsey works in the clinic via video-conferencing technology two half-days each month. He, the APP, the patient, and family caregivers are all part of the video-conference visit.
The APP starts each patient visit by taking a complete history, conducting a neurologic exam, and functional history, and developing a list of the patient's health care goals. Dr. Dorsey is then “rolled” into the room by way of a telemedicine cart, and he assesses the patient's PD history, issues, and symptoms. The nurse practitioner either summarizes the exam or repeats some components of the exam while Dr. Dorsey watches. The telemedicine care monitor is rolled into the hallway so Dr. Dorsey can observe walking and assess a patient's balance.
“The nurse practitioner or myself will be right there with the patient as they have the visit so any hands-on examination that Dr. Dorsey cannot do we are right there to assist,” Dr. Pretzer-Aboff said.
Dr. Dorsey and the APP jointly determine treatment plans; the APP orders laboratory tests, makes referrals, devises educational and family support plans; and provides follow-up care.
The scope of practice for nurse practitioners varies by state. In Delaware, nurse practitioners are fully autonomous, meaning they can treat patients and prescribe all medications without physician oversight.
“We see the patients independent of Dr. Dorsey once the care plans are established,” Haines said. “We write the scripts. We can tweak and fine-tune meds. When they come in next to see Dr. Dorsey, we discuss everything with him.”
Dr. Dorsey said the care provided by the nurse practitioners is excellent.
“When you see a lot of patients with Parkinson's disease or whatever the chronic neurological disorder is, you're going to get pretty good reasonably quickly,” he said. “They are very good at what they do.”
Gregory D. Cascino, MD, FAAN, professor of neurology at Mayo Clinic College of Medicine and chair of the AAN Member Engagement Committee, agreed, adding: “If the AAN is going to be reaching out to professionals who are involved in the care and management of patients with neurologic disease, it is important that we include these individuals.”
Look for more stories about how advance practice practitioners are working in neurology in our continuing series, Advanced Practice Practitioners, throughout the year.