Neurology researchers at the University of Colorado School of Medicine are investigating new methods to expand vital Parkinson’s disease care to the more than 1 million Americans living with the neurodegenerative disease, especially those who lack access to specialists who can offer advanced treatments.
“Research has shown that disparities in access to care have existed, but there hasn’t been as much work done on figuring out solutions. It’s time to start thinking about collecting real world data and designing interventions that are going to be helpful,” says Sana Aslam, DO, assistant professor of neurology and lead author of a new research paper published in Frontiers in Neurology on the future needs of Parkinson’s disease care.
By 2040, the number of Parkinson’s disease cases in the U.S. is expected to double. Researchers say this is escalating burden on health care systems and forging the need for creative solutions that will help connect patients to care that can be a challenge to reach due to insurance, geography, feasibility, and other factors.
Identifying gaps and disparities
There is currently no cure for Parkinson’s disease — which progresses slowly and is often characterized by symptoms like tremors, stiffness, and slow movement — but treatments are advancing. Medication and surgery, including evolving deep brain stimulation technology, can offer relief for some patients.
Specialized care can enhance those treatment opportunities, but not all Parkinson’s disease patients receive care from a specialized provider.
Research has found that approximately 9% of Medicare beneficiaries with Parkinson’s disease receive care from a movement disorder specialist (MDS) — neurologists with specific training in disorders like Parkinson’s disease — while nearly half are treated by general neurologists and 29% rely solely on primary care providers.
This specialty care can improve quality of life and health outcomes, research shows. Working with a neurologist or MDS lessens the likelihood of a Parkinson’s disease patient being discharged into a skilled nursing facility by 21% and experiencing a hip fracture by 14%.
Aslam and her research colleagues say disparities in specialist access are striking. In many areas across the country, the median distance to the nearest movement disorder clinic exceeds 100 miles.
The Movement Disorders Center on the CU Anschutz Medical Campus itself has become a treatment hub, working with individuals from across the Rocky Mountain region and providing care to patients in neighboring states where there is no movement disorder specialty treatment.
“A large portion of the population does not have access to a big academic center like we have here,” Aslam says. “But these services can be extremely beneficial for patients. Movement disorder clinics can offer advanced therapies and surgical interventions. They can also offer expertise in new medications, keep up with evolving guidelines and regulations about exercise and facilitate participation in clinical trials.”
Specialist shortages, financial and insurance-related challenges, and differing referral patterns across patient populations are additional hurdles that keep specialized care out of reach for many.
Addressing barriers
To begin unravelling the complexities of access, Aslam and her colleagues started looking at how other specialties have approached similar challenges. Telestroke, which utilizes video conferencing to help health care providers access stroke experts off-site to help provide the best care, is one example that could translate to Parkinson’s disease.
“There a much bigger time constraint with stroke, but that same idea, to leverage technology to improve outcomes for patients, could be a good model for what’s needed in movement disorders care,” Aslam says.
Along with expanding e-consults and telehealth, the researchers point to standardizing referral pathways and creating clear, evidence-based referral criteria to help primary care providers and general neurologists know when to refer patients to MDS.
Additionally, some policy reforms, like improving transparency around insurance coverage and allowing Medicaid reimbursement for telehealth and e-consults for Parkinson’s disease cases, may increase accessibility, particularly among low-income and marginalized communities.
“Collaboration among health care professionals, advocacy organizations, and policymakers is essential to dismantling barriers to specialist care,” the researchers write in the paper. “By acting now, we can build a more accessible, equitable, and effective care system for all individuals living with not just PD, but other neurodegenerative diseases as well.”
