PHILADELPHIA – Building on the success of the Parkinson’s Disease Research, Education and Clinical Centers, established in 2001, the VA has expanded care for the nearly 100,000 veterans affected by the neurodegenerative disease through the creation of the National VA Parkinson’s Disease Consortium.
“Our biggest accomplishment has been the establishment of the PADRECCs and now the consortium, which brings together experts interested in advancing understanding of veterans with Parkinson’s disease in a hub and spoke system that today includes 54 facilities,” said John E. Duda, MD, national director of the PADRECC programs, director of the Philadelphia PADRECC and co-director of the Center for Neurotrauma, Neurodegeneration and Restoration, both based at the Michael J. Crescenz VAMC in Philadelphia. Duda also is an associate professor of neurology at the Perelman School of Medicine at the University of Pennsylvania.
“As one of the clinicians with the program since the inception of PADRECCs 18 years ago, I’ve seen a dramatic change in how veterans with Parkinson’s disease are taken care of,” he told U.S. Medicine. “Patients were cared for by general neurologists, but a whole slew of new Parkinson’s disease drugs came on board, making that hard to do.”
To keep up with the advancements in the disease and improve care, the PADRECCs were set up to offer expert, multidisciplinary care that included specialists in neurology as well as psychology, psychiatry, speech, pharmacology, physical therapy and other areas.
In addition to PD, the centers focus on other movement disorders including dyskinesis, dystonia, essential tremor and restless leg syndrome as well as atypical Parkinsonian disorders, such as progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration and Lewy body disease, the second-most common type of dementia after Alzheimer’s.
The six centers in Houston, Philadelphia, Portland/Seattle, Richmond, San Francisco and West Los Angeles provided geographic coverage across the U.S., “but many veterans were still not able to get to a PADRECC,” Duda said.
Creation of the consortium improved access to expertise for patients and education and collaboration opportunities for clinicians. Each of the 21 VISNs now has at least one consortium center, allowing veterans to receive specialty care closer to home. Biannual consortium meetings review movement disorder care, current research initiatives and provide educational programming for clinicians.
Bringing the experts together in a structured way also allowed for better communication with the VA’s pharmacy benefits management team. That led to changes in the national formulary to better serve patients with PD, Duda noted.
Telehealth Expands Access
Recent expansion of telehealth has further expanded the program’s reach.
“Access to care is a big challenge in the VA and everywhere. There are simply not enough movement disorder neurologists to cover everybody with Parkinson’s disease,” Duda explained. Telehealth provides one option for better leveraging neurologists with the expertise to help patients in more distant locations.
Research results indicate telehealth is a win for both veterans and the VA.
“Jayne Wilkinson completed the largest study to date comparing in-person care and telehealth care. It shows that, by all measures, telehealth is just as valid, and it’s preferred by a lot of patients because they don’t have to travel,” Duda said. Wilkinson is the associate clinical director of the Philadelphia PADRECC and an associate professor of neurology at the Perelman School of Medicine at the University of Pennsylvania.
Her randomized controlled trial compared in-person visits to video telehealth sessions at home or a satellite clinic near the patient for follow-up care over a 12-month period. The trial enrolled 86 men with an average age of 73 years.1
The study found that all patients were satisfied with their care, with no significant difference between the locations or modes of delivery. The veterans reported greater satisfaction with telehealth, however, in terms of convenience, accessibility and distance. Clinical outcomes and healthcare utilization were similar across groups.
The study supports results seen in other research reporting high levels of satisfaction with telehealth by both patients and providers. In one study done by the University of Rochester Medical Center in New York, 97% of patients said they were satisfied with virtual visits and 55% preferred them to in-person visits. Notably, 85% of the neurologists also expressed satisfaction.2
Reaching more patients means better care and better outcomes.
“Over 40% of people with Parkinson’s disease never receive care from a neurologist, yet studies have shown that people who see a neurologist are less likely to be hospitalized with illnesses related to Parkinson’s disease, have greater independence and are less likely to die prematurely,” said URMC study co-author Ray Dorsey, MD, professor of neurology and director of the Center for Health + Technology at URMC.
Telehealth also makes mental health services available to veterans with Parkinson’s disease. Many patients with PD experience depression, which can further reduce their motor skills, cognitive ability, relationships and overall quality of life.
Relatively few clinicians have the training in both PD and depression that allows them to understand the interaction of the two conditions. A study that started in 2016 at the VA New Jersey Health Care System hopes to expand access to the clinicians with experience in PD and depression via a video-to-home platform that offers a 10-session cognitive behavioral therapy program for veterans and a three-session skills training program for caregivers.
Other telehealth initiatives include initial assessment of veterans for deep brain stimulation. Across the board, Duda noted, “all the PADRECCs are active in increasing access via telehealth.”
- Wilkinson JR, Spindler M, Wood SM, Marcus SC, Weintraub D, Morley JF, Stineman MG, Duda JE. High patient satisfaction with telehealth in Parkinson disease: A randomized controlled study. Neurol Clin Pract. 2016 Jun;6(3):241-251.
- Beck CA, Beran DB, Biglan KM, Boyd CM, and the Connect Parkinson Investigators. National randomized controlled trial of virtual house calls for Parkinson disease. Neurology. 2017 Sep 12;89(11):1152-1161.
These are exactly my issues and frustrations. Clinicians that don’t see the broad picture of dealing with all the issues of depression, anxiety, horrible tremors of body- hands, head, and legs at night. Falls, broken bones, memory loss, personality changes, frustrations, relationships, motor skills of all kinds. It’s absolutely not bi polar, it is absolutely looking at me, the patient wholistically.
Most clinicians simply aren’t capable or willing. Anyway. I’m in VA Northern Indiana- Marion Indiana subdistrict. I travel to Ann Arbor, MI to see Dr. Bohnen for PD assistance. I and my wife Connie would be grateful for any information or assistance you can provide as we are new to this diagnosis. My ssn is 311926719