Gaps in US healthcare bigger for certain Parkinson’s patients: Study

Disparities for women, minorities, rural residents seen in 2019 Medicare data

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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Gaps in healthcare for individuals with Parkinson’s disease in the U.S. have been identified, with notable disparities observed for women, individuals belonging to minority groups, and residents living in rural areas.

That’s according to a study utilizing 2019 Medicare data, which includes approximately 90% of individuals living with Parkinson’s disease in the U.S. The study was supported by the Parkinson’s Foundation and the Michael J. Fox Foundation (MJFF).

“This research provides the most timely and comprehensive study of patients with [Parkinson’s disease] yet conducted,” James Beck, PhD, senior author of the study and chief scientific officer for the Parkinson’s Foundation, said in a press release.

The study, “Care access and utilization among medicare beneficiaries living with Parkinson’s disease,” was published in npj Parkinson’s Disease.

“Studies like this can paint a fuller picture on the public policy priorities that all people with [Parkinson’s disease] and their families need to live a better quality of life with the disease,” added Ted Thompson, MJFF’s senior vice president of public policy.

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Diagnosing and treating Parkinson’s pose challenges for non-specialists

The challenges in diagnosing and treating Parkinson’s arise from inconsistent symptoms presentation, disease progression, and the absence of a definitive biomarker or objective clinical diagnostic test. This complexity poses a particular challenge for physicians with limited expertise in movement disorders.

Ideally, the diagnosis and treatment of Parkinson’s is best handled by general neurologists or movement disorder specialists in an outpatient setting.

Physical and occupational therapists, speech therapists, and mental health specialists can also help patients better manage their symptoms and improve quality of life, through exercise programs and other therapies.

“Being able to work with a team of specialists who are knowledgeable about Parkinson’s disease has made a tremendous difference for me and my family,” said Richard Huckabee, who has Parkinson’s.

Huckabee, who regularly visits a movement disorder specialist and participates in exercise programs and support groups, added: “Whether you’re newly diagnosed or have been living with [Parkinson’s disease] for a while, I encourage you to seek the support you need.”

While there has been an increase in the number of new cases of Parkinson’s diagnosed every year, not everyone can access healthcare the same way.

To find out who among those with Parkinson’s seeks and uses healthcare services, researchers drew on data from Medicare users in 2019. Medicare is a federal program for people who are 65 years or older as well as some younger people with disability.

This research provides the most timely and comprehensive study of patients with [Parkinson’s disease] yet conducted.

Parkinson’s patients accounted for 1.2% of total Medicare users

There were 685,116 people with Parkinson’s in the Medicare population, which accounted for about 1.2% of the total number of Medicare users. Compared with all Medicare users, those with Parkinson’s were more likely to be men (56.3% vs. 45.6%) and older than 70 years (77.9% vs. 57.1%). People with Parkinson’s were slightly less likely to reside in rural areas (16% vs. 17.5%).

Among individuals with Parkinson’s, 2.3% were Asian, 5.9% Black, 2.6% Hispanic, 0.3% North American Native, and 85.3% white. People of color were underrepresented among Parkinson’s beneficiaries compared to the overall Medicare population (14.7% vs. 20.7%). This underrepresentation was particularly notable for Black Parkinson’s beneficiaries, who make up 5.9% of the Parkinson’s population but 10.5% of the overall Medicare population.

“Whether this [gap] is due to underdiagnosis, delay in diagnosis, reduced survival, or truly lower prevalence of [Parkinson’s disease] among these populations is not known,” the researchers wrote.

About 9.1% of people with Parkinson’s visited a movement disorder specialist at least once in 2019. The percentage was lower for women than men (8.4% vs. 9.8%), people of color versus white (4.6% to 7.8% vs. 9.4%), and those living in rural versus urban areas (7.2% vs. 9.5%).

Forty percent of those with Parkinson’s did not see a neurologist at all during the year. They “instead sought care from a primary care physician or did not see a physician at all,” the researchers wrote. The remaining 60% visited a neurologist or movement disorder specialist at least once.

Those “who are not accessing recommended or best practice care are likely to experience [Parkinson’s disease] very differently,” said Allison Willis, MD, associate professor of neurology at the University of Pennsylvania’s Perelman School of Medicine and one of the study’s researchers.

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‘Gap in mental health coverage in current Medicare policies’

Few people with Parkinson’s received recommended services such as physical therapy (20.3%), occupational therapy (9.5%), or speech therapy (7.5%). While more than half (52.9%) experienced depression, few visited a psychologist (1.9%) or a psychiatrist (3.9%).

“This may be because there is a gap in mental health coverage in current Medicare policies which creates cost and network barriers for beneficiaries attempting to access needed mental health services,” the researchers wrote.

These gaps in healthcare highlight the need for improved access to comprehensive care for people with Parkinson’s disease, especially for those who belong to minority groups or live in rural areas.

“These findings underscore the need for better training of general neurologists and other care providers treating people with [Parkinson’s disease],” Beck said.

Besides offering specific training, it’s important to continue “pursuing strategies to improve access to care across demographic groups and geographies,” the researchers concluded.