Medicare Study Exposes Health Disparities in Access to Parkinson Disease Care
A peer-reviewed analysis revealed critical gaps in care for patients with Parkinson disease in the United States, including disparities affecting women, people of color, and residents of rural areas.
James Beck, PhD
In a recent study published in NPJ Parkinson’s Disease using a diverse population of 274,046 patients with Parkinson disease (PD), results showed that 40% of PD Medicare beneficiaries did not see a neurologist in the span of one year and only 9.1% went to a movement disorder specialist (MDS).1 These findings suggest significant health disparities not only for beneficiaries but also for those who face challenges with PD diagnosis and access to treatment.
In the remainder of patients with PD who did not see a MDS (n = 249,107), 50% received care for the disease from general neurologists, and 29% received care from primary care providers. The study also showed disparities in access to care for patients who identify as women, patients of color, and those who reside in rural areas, with each facing challenges for receiving diagnosis and treatment.
"By utilizing 2019 Medicare data that represents 90% of people living with Parkinson in the U.S., this research provides the most timely and comprehensive study of patients with PD yet conducted," senior author James Beck, PhD, chief scientific officer at the Parkinson's Foundation said in a statement.2 "These findings underscore the need for better training of general neurologists and other care providers treating people with PD.”
The analysis focused on the demographics, service utilization patterns, and disparities in access to care for patients with PD. In addition, it was performed in collaboration between the Parkinson's Foundation, NORC at the University of Chicago, The Michael J. Fox Foundation for Parkinson's Research (MJFF) and coauthor Allison Willis, MD, MS, MDS, an associate professor of Neurology at the Perelman School of Medicine at the University of Pennsylvania.
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"This impactful analysis reveals the significant gaps in access to both recommended and best practice care for PD," Willis said in a statement.2 "Also, our scientific reporting and understanding of PD has focused on specialty center populations, which these data suggest are a minority of the PD population. Persons who are not accessing recommended or best practice care are likely to experience PD very differently."
Notably, despite the fact that depression affects more than half (53%) of patient with PD, approximately 2% of patients reported received treatment from a mental health professional. Also, there were low rates of using supplemental therapies for PD management, such as physical and occupational therapy, speech-language therapy, and mental health services. For example, only 20% of patients saw a physical therapist.
It was noted in a statement from the Parkinson’s Foundation that the population used in the analysis expanded on the inequities in care for subgroups that were historically not included in PD research.2 The analysis also focused on data from 2019 in order to eliminate prior disruptions in case access that occurred during the COVID-19 pandemic. The information from that time provided a pre-COVID baseline, which could potentially assist in informing future research on examining the changes that have happened during the pandemic.
"While a lot of work remains in order to provide expanded care services for people and families living with PD, this is a critical step in understanding the disparities in access to expert care across populations," Ted Thompson, JD, senior vice president of public policy at MJFF said in a statement.2 "Studies like this can paint a fuller picture on the public policy priorities that all people with PD and their families need to live a better quality of life with the disease."
The Parkinson’s Foundation estimated that there are 1 million patients living with PD in the US, with the number expected to increase to 1.2 million by 2030.2 In the US, there are currently only 660 MDS and a total of 6 of them practicing in rural areas. Thus, there is a shortage of expertly trained specialists for the growing PD population, which can bring challenges with seeking care such as long wait times for appointments and unreasonable distances to travel.
Despite the challenges, there are opportunities for improving PD care access such as through the expansion of specific training for healthcare professionals on PD and pursuing the strategies that help all types of patient population groups to receive the care that they need. It was also noted that overall, the findings from this Medicare analysis will support policy development and future studies go even deeper into issues with care access faced by PD beneficiaries, especially those who may not be living near highest-trained specialists.2
