Black, Hispanic, and Asian Patients with Parkinson’s Have Wo… : Neurology Today
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Article In Brief
Even after adjusting for potential confounding factors, total baseline scores on the self-reported Parkinson’s Disease Questionnaire on quality of file, were significantly worse in Black, Hispanic, and Asian patients when compared with White, non-Hispanic patients.
Black, Hispanic, and Asian patients with Parkinson’s disease (PD) have worse health-related quality of life (HRQoL) than White, non-Hispanic patients, according to findings from a retrospective, cross-sectional, and longitudinal cohort study.
The study included 8,514 individuals evaluated at Parkinson’s Foundation Centers of Excellence across the United States and participating in the Parkinson’s Outcomes Project.
Even after adjusting for potential confounding factors—including age; sex; cognitive scores; PD duration and stage; and comorbid conditions at baseline, including cancer, heart disease, diabetes and hypertension—total baseline scores on the self-reported Parkinson’s Disease Questionnaire (PDQ-39), which assesses PD-specific quality of life across eight dimensions, were significantly higher (worse) in Black, Hispanic, and Asian patients when compared with White, non-Hispanic patients (p<0.001).
Individual PDQ-39 subscales measuring mobility, activities of daily living (ADL), emotional well-being, stigma, social support, and pain were also worse among Black, Hispanic, and Asian patients. Mobility, ADL, stigma, and social support sub-scores were particularly high for Black study participants compared with White patients. Hispanic patients were likely to have impairment in mobility and ADL, and Asian patients had significantly worse scores on mobility, ADL, stigma, pain, and social support.
“To our knowledge, our study is the first to demonstrate worse HRQoL in Asian and Hispanic patients compared to White individuals living with PD,” the authors wrote in the study published online April 5 in Neurology.
“Given the limited access to neurologists and movement disorders specialists, we would expect even larger health care gaps and differences outside dedicated PD centers,” wrote senior author Connie Marras, MD, PhD, professor of neurology at the University of Toronto and a movement disorders neurologist at the University Health Network; lead author Daniel Garbin Di Luca, MD, a movement disorders fellow at the Toronto Western Hospital of the University of Toronto, and colleagues.
“The findings of differing medication use definitely need to be followed up to understand why this is. Is the health care team offering different treatments preferentially to different groups for whatever reason, or is patient preference and threshold for accepting treatment involved? Or is it both? This is a complex question.”—DR. CONNIE MARRAS
The study also found notable differences in care management. Across all groups, more than 80 percent of patients took a form of levodopa, but White patients were significantly more likely to be prescribed dopamine agonists when compared with Black patients (41 percent vs. 28.7 percent, respectively). White patients also were significantly more likely to be prescribed antidepressant medications (32.1 percent compared with 23 percent of Black patients and 21.9 percent of Asian patients). And among patients with higher emotional subscores on the PDQ-39 (p>=10), the rate of antidepressant treatment was higher in White patients: 52.1 percent vs. 35.6 percent in Black patients, 35.9 percent in Asian patients, and 41.5 percent in Hispanic patients.
Nonpharmacologic management also differed across groups. Hispanic patients were less likely to use speech and physical therapy—10.7 percent and 28.5 percent, respectively, compared with 15.5 percent and 38.2 percent in White patients, 14.1 percent and 35.8 percent in Black patients, and 16.3 percent and 43.5 percent in Asian patients, respectively. Asian patients had the highest enrollment in exercise programs (83.9 percent) vs. 72.3 percent of White patients, 71.4 percent of Hispanic patients and 65.4 percent of Black patients. But only 2.4 percent of Asian patients enrolled in social worker counseling, compared with 7.4 percent of both White and Black study participants and 4.3 percent of Hispanic participants.
“Previous studies have demonstrated that underrepresented minorities may have limited access to neurologists, medications, and other therapies,” the authors wrote. “Our study reveals that some health disparities and management differences persist even with ongoing expert neurologist care.”
“There has been data in the literature suggesting that health outcomes in PD are generally worse in minority populations and that there is delayed diagnosis and undertreatment in these groups, particularly less use of deep brain stimulation,” said Andrew D. Siderowf, MD, MS, the Hurtig-Stern Professor of Neurology and chief of the movement disorders division in the Penn Perelman School of Medicine department of neurology, who was not involved with the study.
“But this is the largest study to date assessing differential health outcomes by race and ethnicity among PD patients, involving more than 30 centers of excellence and containing detailed data,” he said. “It not only confirms previous findings in smaller studies that showed worse quality-of-life scores in minority patients compared with White patients, but also some undertreatment in key areas.”
“The findings of differing medication use definitely need to be followed up to understand why this is,” said Dr. Marras. “Is the health care team offering different treatments preferentially to different groups for whatever reason, or is patient preference and threshold for accepting treatment involved? Or is it both? This is a complex question.”
The Role of Cognition
Another key study finding related to cognition. Black and Hispanic patients had overall lower cognitive scores, which the authors noted is consistent with previous studies, in which Black and Hispanic individuals with PD performed worse in cognitive testing. In a longitudinal analysis, the inclusion of cognitive scores partially mediated the association between race/ethnicity and PDQ-39 scores (p<0.001).
“This finding suggests that the difference in HRQoL observed among different racial and ethnic groups might be partially mediated by cognitive differences; and, therefore, additional cognitive screening and treatment might be particularly important when evaluating an ethnically diverse group of patients,” the authors wrote.
“This is not surprising; cognition is one of the biggest determinants of quality of life in PD,” said David Standaert, MD, PhD, FAAN, John N. Whitaker Professor & Chair of Neurology and director of the Bachmann-Straus Dystonia and Alabama Morris K. Udall Center of Excellence in Parkinson’s Research at the University of Alabama—Birmingham.
“We primarily associate PD with motor symptoms, but cognition is a very significant factor and is the biggest indicator for nursing home admission. When cognitive symptoms develop, they tend to be very limiting to people, and the treatments we have are really inadequate.”
A longitudinal study published in 2016 in Parkinsonism and Related Disorders found that patients with baseline PD and mild cognitive impairment (PD-MCI) had worse HRQoL over 36 months, with poor attention being considered a robust predictor of decline.
The study findings on cognition have some limitations, however, Dr. Di Luca said. “The cognitive tests were limited, and these cognitive scores were developed years ago in a majority White population, and some studies have suggested that they may not be generalizable to the population as a whole, including African American patients,” he said. “That’s a matter of controversy and discussion in the field. Some investigators might consider adjusting for this, but the consensus at present is to use the same score for all patients.”
Lower cognitive scores in Black, Hispanic, and Asian patieents could also be associated with comorbidities and a higher prevalence of cardiovascular risk factors; in the study, Black patients had the highest prevalence of self-reported heart conditions at 32.1 percent. In addition, social determinants of health—such as lower socioeconomical status, education, and other psychological stressors—may be associated with worse cognitive scores, the authors said.
Significant Findings, but Still a Small Population
Although the investigators developed significant findings comparing quality of life and other factors among racial and ethnic subgroups because of the overall large size of the study, the percentage of non-White study participants was still less than 10 percent. White participants made up 90.28 percent of the study cohort; 5.81 percent of the group was Hispanic, 1.99 percent was Asian, and 1.9 percent was Black.
“We have to think about how to extend the reach of PD centers of excellence, which provide expert care, out to a larger number of people who don’t necessarily have the time or means to come to a center.”—DR. DAVID STANDAERT
“We need to be present over time at community programs and church gatherings and other important places in the neighborhoods where patients live. In this way, trust has a chance to build up naturally, and this trust can provide a basis for providing patient-centered care that makes a difference in people’s lives.”—DR. ANDREW D. SIDEROWF
“We believe that this study confirms what we know from other literature, that some of these patients do have trouble even seeing a neurologist in the first place, then getting a formal and accurate diagnosis of PD, and in this specific case, being seen by a movement disorders neurologist at a PD center of excellence.”
—DR. DANIEL GARBIN DI LUCA
“We believe that this study confirms what we know from other literature, that some of these patients do have trouble even seeing a neurologist in the first place, then getting a formal and accurate diagnosis of PD, and in this specific case, being seen by a movement disorders neurologist at a PD center of excellence,” Dr. Di Luca said.
Dr. Standaert said that has been his experience. “We have been involved for more than 10 years in the Michael J. Fox Foundation’s Parkinson’s Progression Markers Initiative (PPMI), and until recently, PPMI has an extremely low rate of minority enrollment,” he said. “It’s downright tiny, but steps are being taken now to improve this.”
Dr. Siderowf noted that “the best population estimates we have for the prevalence of PD suggest that while it is probably somewhat more common in White than non-White populations, it’s not to this extent.”
“That signals to me that non-White patients are getting this specialty care less often and having more difficulty accessing these centers of excellence, but even when they are able to get treated at one of these centers, their care and quality of life are different,” he said. “I don’t think it reflects bad intentions; the reasons are unclear. We need to think about interventional studies and qualitative research to understand why and how this is happening.”
Dr. Marras agreed. “Some of the research that could help us to understand these factors better must be qualitative in nature,” she said. “In-depth conversations with groups of non-White PD patients about how they seek and experience care, and with health care providers about what they see from their side, is needed to help to understand the decision-making processes at the health care level that may contribute to differences in outcomes, as well as the barriers and facilitators to optimizing these patients’ health and quality of life.”
Focused population-based studies in PD are also necessary, Dr. Standaert said. “To improve our understanding of what is going on here, we need to take a defined population or geographical area and assess the people who live there and how PD is affecting them,” he said.
Other Studies, Interventions
One large study that aims to better understand PD in the Black community is the Black and African American Connections to Parkinson’s Disease (BLAAC-PD) project. Part of the Global Parkinson’s Genetics Program of the National Institutes of Health (NIH), it is specifically seeking data about the genes that may be linked to PD in Black populations.
The Michael J. Fox Foundation also funded other ongoing studies seeking a better understanding of racial and ethnic disparities in PD, such as a British study of cognitive differences in a South Asian population with PD; a University of Chicago study of the clinical disease course and health care access in Black people with PD; and a prospective cohort study of Asian Americans, Native Hawaiians, and Pacific Islanders with PD being conducted by investigators with The Queen’s Medical Center in Honolulu, home to the first PD and Movement Disorder Center in Hawaii.
Interventions to improve quality of life among Black, Hispanic, and Asian patients with PD need to focus on social determinants of health, such as economic and geographic factors, Dr. Standaert said. “For example, our state is very rural and has many areas with limited transportation and access to care. We have to engage community partners, primary health care providers, federally qualified health centers, and rural clinics. We often work with religious organizations as well; churches can be quite powerful as a way to provide outreach and information. We have to think about how to extend the reach of PD centers of excellence, which provide expert care, out to a larger number of people who don’t necessarily have the time or means to come to a center.”
Dr. Siderowf agreed, adding: “We need to be present over time at community programs and church gatherings and other important places in the neighborhoods where patients live. In this way, trust has a chance to build up naturally, and this trust can provide a basis for providing patient-centered care that makes a difference in people’s lives.”
Disclosures
Drs. Marras and Garbin Di Luca had no disclosures. Dr. Standaert has received consulting fees from Abbvie Inc., Curium Pharma, Appello, Theravance, Sanofi-Aventis, Alnylam Pharmaceutics, Coave Therapeutics, BlueRock Therapeutics, and F. Hoffman-La Roche.
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