Nonwhite Parkinson’s patients see worse HRQoL than white patients

Quality of life was assessed with the PDQ-39, which surveys 8 life domains

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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Black, Hispanic, and Asian people with Parkinson’s disease report lower health-related quality of life (HRQoL) than their white counterparts, a recent study showed. Differences in cognitive performance were found to partly underlie these disparities.

The study, “Racial and Ethnic Differences in Health-Related Quality of Life for Individuals with Parkinson Disease Across Centers of Excellence,” was published in Neurology, the medical journal of the American Academy of Neurology (AAN). HRQoL refers to a person’s perceived physical and mental health and their impacts on daily life over time.

“Evaluating the underlying reasons behind differences in quality of life between racial and ethnic groups is crucial to improve care,” Daniel Di Luca, MD, the study’s first author of the University of Toronto, Canada, said in a press release from AAN. “Future studies are needed to gain a better understanding of the reasons for treatment and outcome differences in underrepresented populations, including differences in thinking and memory, clinical care and quality of life.”

While Parkinson’s can affect all races, racial and ethnic minorities have been historically underrepresented in clinical research, which has hampered researchers’ “understanding of treatments and outcomes across these populations,” Di Luca said, adding “previous research has shown that some populations may have limited access to neurologists, medications, and other therapies.”

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Di Luca, along with colleagues at North American institutions and the Parkinson’s Foundation retrospectively reviewed longitudinal data from 8,514 patients at Parkinson’s Disease Centers of Excellence to better understand differences in outcomes, including HRQoL, among various racial and ethnic groups. Most patients (90.2%) self-identified as white and the remaining identified as Hispanic (5.81%), Asian (2%), or African American (1.9%).

Patients’ self-reported HRQoL was assessed with the Parkinson’s Disease Questionnaire-39 (PDQ-39), which asks how often difficulties are experienced across eight daily life domains. Scores range from 0 to 100 and higher scores indicate worse quality of life.

Results showed total scores were significantly higher among African Americans, Hispanics, and Asians than white patients, reflecting a worse HRQoL even after adjusting for potentially influential factors such as age, sex, disease duration, or other medical conditions.

White patients scored an average of 22.73, whereas Asian patients scored 25.43, Hispanics scored 26.62, and African Americans scored 28.56. These differences were statistically significant for most PDQ-39 domains, including those related to mobility, emotional well-being, social support, and pain.

Differences in cognitive performance accounted for some variation in quality of life between the white and nonwhite groups, analyses showed.

Previous studies have found lower socioeconomic status, educational attainment, psychological stressors, and cultural biases can significantly influence performance on cognitive testing, according to Di Luca.

Despite relatively small patient numbers in the Asian and African American groups, the study indicates “Black, Hispanic, and Asian people with Parkinson’s do have a lower quality of life than white people, and that some health disparities and management differences persist even with ongoing expert neurologist care,” Di Luca said.

“The underlying reason for these differences needs to be a focus of future research,” the researchers wrote. The study was supported by the Parkinson’s Foundation and its Parkinson’s Outcomes Project.