Lack of quality care for people with Parkinson’s throughout the U.S.

Lack of quality care for people with Parkinson's throughout the U.S.

Lack of Adequate Care for Parkinson’s Disease Patients

People with Parkinson’s disease often aren’t receiving the necessary care for their debilitating movement disorder, according to a recent study. Medicare data analysis indicates that three out of ten Parkinson’s patients rely on primary care physicians for treatment, while one out of ten do not see a doctor at all. Only one out of ten patients consults with a neurologist specifically trained in treating Parkinson’s, raising concerns about the lack of expertise in managing the disease as it progresses.

The study, led by James Beck, the chief scientific officer for the Parkinson’s Foundation, utilized 2019 claims data from Medicare, which covers about 90% of individuals with Parkinson’s. Currently, an estimated one million Americans have been diagnosed with Parkinson’s, and nearly 90,000 new cases are identified in the United States annually. However, the analysis revealed that around 11% of Parkinson’s patients covered by Medicare received no medical care whatsoever in 2019, whether from a neurologist or a family doctor.

Among those who did seek medical care, 29% only received treatment from a primary care physician, while a mere 9% consulted with a movement disorder neurologist. These specialized doctors possess the necessary training to tailor treatment to the individual nuances of each patient’s condition. Shockingly, about half of Parkinson’s patients received treatment from a general neurologist, and the disparities in care access persist for women, people of color, and those living in rural areas.

Moreover, Parkinson’s patients were also not availing themselves of other healthcare professionals who could help alleviate their difficulties. The study found that only 20% of patients were seeing a physical therapist, 10% an occupational therapist, and 7.5% a speech therapist. Additionally, despite approximately one-third of Parkinson’s patients experiencing depression, only around 2% received treatment from a mental health professional.

The shortage of movement disorder neurologists in the United States is a significant factor contributing to the lack of adequate care for Parkinson’s patients. With approximately 650 to 700 specialists in North America, not every patient can access this highly specialized care. This shortage is even more pronounced in rural areas, exacerbating the difficulties faced by patients in remote locations who struggle to find even a general neurologist, let alone one with specific expertise in Parkinson’s.

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Another possible reason for the insufficient care is the patients’ lack of awareness regarding the importance of seeking out a specialist, especially as the disease progresses. While seeing a general neurologist is generally sufficient for those recently diagnosed with Parkinson’s, as the condition advances, managing the disease becomes more complex. Multiple medications may be required to control symptoms effectively. Additionally, a strong patient-doctor relationship can create hesitancy in seeking care from someone other than their personal physician.

To address these challenges, Beck advises Parkinson’s patients who cannot find a movement disorder neurologist to seek out a general neurologist with experience in treating the disease. They are more likely to provide quality care when they regularly see a significant number of patients with Parkinson’s. However, this solution is not without its limitations, as it does not solve the shortage of neurologists in rural areas, where access to specialized care remains a significant concern.

The study did not distinguish between enrollees of traditional Medicare and Medicare Advantage plans, making it unclear if coverage type influences the barriers faced by patients in accessing necessary care. Further research is required to explore potential differences in the use of specialists between the two programs and their ability to facilitate care effectively.

In conclusion, the limited access to specialized care for Parkinson’s disease patients is a pressing issue. Efforts must be made to address the shortage of movement disorder neurologists and ensure that patients, regardless of their location or demographic background, have access to appropriate care. Increasing awareness among patients about the importance of seeking specialized care as their condition progresses will also be vital. By addressing these gaps, we can improve the quality of life for individuals living with Parkinson’s disease.

Sources: – James Beck, PhD, Chief Scientific Officer, Parkinson’s Foundation, New York City – Gretchen Jacobson, PhD, Vice President, Medicare Program, Commonwealth Fund, Washington, D.C. – npj Parkinson’s Disease, July 10, 2023