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Researchers say many people with Parkinson’s disease need better access to treatments. Maskot/Getty Images
  • Researchers say a significant number of people with Parkinson’s disease are not getting the treatment they should receive.
  • They say that in particular people of color and those who live in rural areas do not have access to treatments.
  • Experts say more movement disorder specialists in particular are needed.

More than 1 million people in the United States have Parkinson’s disease, but few may be receiving the comprehensive and recommended care they need, a new study suggests.

For their findings, the researchers looked at a population of Medicare recipients who had Parkinson’s in 2019, prior to the COVID-19 pandemic.

The sampling covered about 90% of the population in the United States who have the disease.

The researchers reported that half of those studied received care from general neurologists and 9% received care from movement disorder specialists who could help tailor treatments to each person. However, 40% received care from primary care providers or didn’t see a physician during the year.

The researchers concluded that their findings mean that 4 in 10 people studied never saw a neurologist for a fundamentally neurological disease.

Moreover, they said people of color and people living in rural areas were the least likely to have seen a neurologist or consulted with a movement disorder specialist, showing significant disparities in care access by demographic, according to the research published today in the journal npj Parkinson’s Disease.

Most people also did not receive critical supplemental therapies, including occupational therapy, speech-language therapy, and mental health services, the study noted. For instance, while more than half of Parkinson’s patients have depression, just 2% received treatment.

Similarly, only one in five of the people studied with the disease were seeing a physical therapist.

By studying this large population with data collected before the COVID-19 pandemic, the researchers say they hope to establish a more normal baseline for these care conditions to better address these gaps in treatment going forward.

“To understand how to best improve the level of care for people with [Parkinson’s], the Parkinson’s Foundation recently hosted a summit of care providers and people with [Parkinson’s] to understand and define best practices of high-quality, patient-centered PD care,” said James Beck, PhD, the chief scientific officer of the Parkinson’s Foundation and senior author of the study. “Once we are able to define ‘best care,’ our goal will be to drive the adoption of those practices across disciplines – reducing barriers to improve equitable access to [Parkinson’s] care.

While there are many disparities to address in Parkinson’s care, the researchers said that in particular there is a need for more movement disorder specialists to help improve patient care and quality of life.

According to the researchers, there are only 660 of these specialists in the United States and just six in rural areas.

“This study is a clear indication that relying on only top-tier specialists to care for those with [Parkinson’s] is simply not feasible,” Beck told Medical News Today. “There are too few movement disorders specialists in the U.S. Our general neurologists and primary care practitioners need additional support and, likely, training to improve the care they provide to their patients with [Parkinson’s].”

“It is an emotional study to review,” said Dr. Elana Clar, a neurologist and movement disorder specialist practicing in New Jersey. “As movement specialists, we always strive to provide the highest level of care, but this report is a sobering reminder about the challenges in uniformly delivering it to all the Parkinson’s patients who need it.”

However, while getting more specialists trained is essential, the study points to other pathways to better care for people with Parkinson’s.

“While increasing access to movement disorders specialists is the ultimate goal, this study suggests that collaboration with community neurologists and a multidisciplinary approach with other specialists (i.e., psychiatry) is critical to providing high quality, comprehensive care for this community,” Clar told Medical News Today.

“With Parkinson’s, the key to a good quality of life is self-advocacy,” she added. “That means having a strong support network, remaining physically active, seeking out the right nutrition, and obtaining evaluations by the appropriate physicians.”

As for the future, one benefit that the COVID-19 pandemic had on medical care was the increased use of telemedicine, which experts say could be critical for expanding care to rural and underserved populations.

“The legislative changes that emerged during COVID for telemedicine will need to remain in place since virtual care clearly plays a key role in expanding outreach, education, and specialized care to the [Parkinson’s] communities that need it most,” Clar said.

Beck agreed.

“It will take time to implement changes in the healthcare system,” he said. “However, educating people on the need for better care can happen today. We encourage people with [Parkinson’s] and their loved ones to visit or call the Parkinson’s Foundation Helpline at 1-800-473-4636 for more information.”