While the devastating neurologic effects of Parkinson disease are well understood, startling disparities remain in the data when it comes to who is affected by this condition. It’s a knowledge gap that Allison Willis, MD, Director of the Translational Center of Excellence for Neuroepidemiology and Neurology Outcomes Research, is working to overcome. By capturing data on underrepresented segments of the population, Dr. Willis is hoping to flip the narrative on Parkinson disease so that all patients receive better care and improved outcomes.
Multiple studies have demonstrated that being male is an independent risk factor for Parkinson disease. “The sex difference is thought to be based on a biological component that is still undefined,” explains Dr. Willis. “Women appear to have a lower risk of developing Parkinson’s unless they have their ovaries removed before menopause. In that case, their risk is similar to men. Gender-based differences in occupational exposure to potential neurotoxicants, such as pesticides, may also play a role.”
However, age is the strongest risk factor for developing Parkinson’s, and since older women outnumber older men in the U.S., the actual number of women diagnosed with this disease is close to the number of men. Yet, most Parkinson’s research is based on the experiences of college or graduate-school-educated white men.
Dr. Willis received funding from the NIH to lead a research program focused on understanding how Americans with Parkinson disease were receiving care. She found that women, minorities, and rural-dwelling Parkinson’s patients were overwhelmingly less likely to be treated by a neurologist or participate in research.
This disparity directly affects outcomes. People not treated by a neurologist were more likely to be hospitalized for adverse drug events or Parkinson disease-related conditions, more likely to suffer hip fractures, more likely to spend time in a long-term care facility and had lower survival rates.
“It’s clear that more research is needed to understand the drivers of these disparities,” Dr. Willis says. Partnering with the Parkinson Disease Foundation, Dr. Willis was the physician-scientist leader of a Patient Centered Outcomes Research Institute-funded effort to develop a national research network of academic centers focused on understanding the barriers to women in receiving Parkinson’s care and participating in research. As part of this national effort, women nationwide were asked about their experiences accessing Parkinson’s care and research.”
Women reported multiple barriers, including competing demands as a care giver for children, grandchildren, parents and spouses/partner, difficulty accessing transportation, and less social support. Another shocking piece of data revealed that women reported they simply weren’t asked to participate in research.
“Patients overwhelmingly stated that, if they had been asked, they would have said yes,” says Dr. Willis.
Dr. Willis and her colleagues now have a better understanding of the driving factors behind the gender disparity and are creating ways to deliver equal care and opportunity to this half of the Parkinson’s population.
“We’ve identified a number of meaningful targets for intervention,” Dr. Willis says. “We are standardizing our methods of approaching patients to participate in research, finding ways to perform this research in patient homes via telehealth, and considering ways to support the ability of general practitioners to initiate guideline-adherent care for neurological conditions.”