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May 23, 2023; 100 (21) Research Article

Racial and Ethnic Differences in Health-Related Quality of Life for Individuals With Parkinson Disease Across Centers of Excellence

View ORCID ProfileDaniel Garbin Di Luca, Sheng Luo, Hongliang Liu, Melanie Cohn, Thomas L. Davis, Adoldo Ramirez-Zamora, Miriam Rafferty, Nabila Dahodwala, Anna Naito, Marilyn Neault, View ORCID ProfileJames Beck, Connie Marras
First published April 5, 2023, DOI: https://doi.org/10.1212/WNL.0000000000207247
Daniel Garbin Di Luca
From the Edmond J. Safra Program in Parkinson's Disease (D.G.D.L., C.M.), Movement Disorders Clinic, Krembil Brain Institute, Toronto Western Hospital; Institute of Health Policy (D.G.D.L., C.M.), Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Ontario, Canada; Division of Biostatistics and Bioinformatics (S.L., H.L.), Duke University, Durham, NC; Krembil Brain Institute (M.C.), Toronto Western Hospital, Ontario, Canada; Department of Neurology (T.L.D.), Vanderbilt University Medical Center, Nashville, TN; Department of Neurology (A.R.-Z.), Fixel Neurological Institute, University of Florida, Gainesville; Shirley Ryan Ability Lab (M.R.), Department of Physical Medicine and Rehabilitation, Department of Psychiatry and Behavioral Science, Northwestern University, Chicago, IL; Department of Neurology (N.D.), University of Pennsylvania, Philadelphia; and Parkinson's Foundation (A.N., M.N., J.B.), New York, NY.
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Sheng Luo
From the Edmond J. Safra Program in Parkinson's Disease (D.G.D.L., C.M.), Movement Disorders Clinic, Krembil Brain Institute, Toronto Western Hospital; Institute of Health Policy (D.G.D.L., C.M.), Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Ontario, Canada; Division of Biostatistics and Bioinformatics (S.L., H.L.), Duke University, Durham, NC; Krembil Brain Institute (M.C.), Toronto Western Hospital, Ontario, Canada; Department of Neurology (T.L.D.), Vanderbilt University Medical Center, Nashville, TN; Department of Neurology (A.R.-Z.), Fixel Neurological Institute, University of Florida, Gainesville; Shirley Ryan Ability Lab (M.R.), Department of Physical Medicine and Rehabilitation, Department of Psychiatry and Behavioral Science, Northwestern University, Chicago, IL; Department of Neurology (N.D.), University of Pennsylvania, Philadelphia; and Parkinson's Foundation (A.N., M.N., J.B.), New York, NY.
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Hongliang Liu
From the Edmond J. Safra Program in Parkinson's Disease (D.G.D.L., C.M.), Movement Disorders Clinic, Krembil Brain Institute, Toronto Western Hospital; Institute of Health Policy (D.G.D.L., C.M.), Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Ontario, Canada; Division of Biostatistics and Bioinformatics (S.L., H.L.), Duke University, Durham, NC; Krembil Brain Institute (M.C.), Toronto Western Hospital, Ontario, Canada; Department of Neurology (T.L.D.), Vanderbilt University Medical Center, Nashville, TN; Department of Neurology (A.R.-Z.), Fixel Neurological Institute, University of Florida, Gainesville; Shirley Ryan Ability Lab (M.R.), Department of Physical Medicine and Rehabilitation, Department of Psychiatry and Behavioral Science, Northwestern University, Chicago, IL; Department of Neurology (N.D.), University of Pennsylvania, Philadelphia; and Parkinson's Foundation (A.N., M.N., J.B.), New York, NY.
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Melanie Cohn
From the Edmond J. Safra Program in Parkinson's Disease (D.G.D.L., C.M.), Movement Disorders Clinic, Krembil Brain Institute, Toronto Western Hospital; Institute of Health Policy (D.G.D.L., C.M.), Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Ontario, Canada; Division of Biostatistics and Bioinformatics (S.L., H.L.), Duke University, Durham, NC; Krembil Brain Institute (M.C.), Toronto Western Hospital, Ontario, Canada; Department of Neurology (T.L.D.), Vanderbilt University Medical Center, Nashville, TN; Department of Neurology (A.R.-Z.), Fixel Neurological Institute, University of Florida, Gainesville; Shirley Ryan Ability Lab (M.R.), Department of Physical Medicine and Rehabilitation, Department of Psychiatry and Behavioral Science, Northwestern University, Chicago, IL; Department of Neurology (N.D.), University of Pennsylvania, Philadelphia; and Parkinson's Foundation (A.N., M.N., J.B.), New York, NY.
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Thomas L. Davis
From the Edmond J. Safra Program in Parkinson's Disease (D.G.D.L., C.M.), Movement Disorders Clinic, Krembil Brain Institute, Toronto Western Hospital; Institute of Health Policy (D.G.D.L., C.M.), Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Ontario, Canada; Division of Biostatistics and Bioinformatics (S.L., H.L.), Duke University, Durham, NC; Krembil Brain Institute (M.C.), Toronto Western Hospital, Ontario, Canada; Department of Neurology (T.L.D.), Vanderbilt University Medical Center, Nashville, TN; Department of Neurology (A.R.-Z.), Fixel Neurological Institute, University of Florida, Gainesville; Shirley Ryan Ability Lab (M.R.), Department of Physical Medicine and Rehabilitation, Department of Psychiatry and Behavioral Science, Northwestern University, Chicago, IL; Department of Neurology (N.D.), University of Pennsylvania, Philadelphia; and Parkinson's Foundation (A.N., M.N., J.B.), New York, NY.
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Adoldo Ramirez-Zamora
From the Edmond J. Safra Program in Parkinson's Disease (D.G.D.L., C.M.), Movement Disorders Clinic, Krembil Brain Institute, Toronto Western Hospital; Institute of Health Policy (D.G.D.L., C.M.), Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Ontario, Canada; Division of Biostatistics and Bioinformatics (S.L., H.L.), Duke University, Durham, NC; Krembil Brain Institute (M.C.), Toronto Western Hospital, Ontario, Canada; Department of Neurology (T.L.D.), Vanderbilt University Medical Center, Nashville, TN; Department of Neurology (A.R.-Z.), Fixel Neurological Institute, University of Florida, Gainesville; Shirley Ryan Ability Lab (M.R.), Department of Physical Medicine and Rehabilitation, Department of Psychiatry and Behavioral Science, Northwestern University, Chicago, IL; Department of Neurology (N.D.), University of Pennsylvania, Philadelphia; and Parkinson's Foundation (A.N., M.N., J.B.), New York, NY.
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Miriam Rafferty
From the Edmond J. Safra Program in Parkinson's Disease (D.G.D.L., C.M.), Movement Disorders Clinic, Krembil Brain Institute, Toronto Western Hospital; Institute of Health Policy (D.G.D.L., C.M.), Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Ontario, Canada; Division of Biostatistics and Bioinformatics (S.L., H.L.), Duke University, Durham, NC; Krembil Brain Institute (M.C.), Toronto Western Hospital, Ontario, Canada; Department of Neurology (T.L.D.), Vanderbilt University Medical Center, Nashville, TN; Department of Neurology (A.R.-Z.), Fixel Neurological Institute, University of Florida, Gainesville; Shirley Ryan Ability Lab (M.R.), Department of Physical Medicine and Rehabilitation, Department of Psychiatry and Behavioral Science, Northwestern University, Chicago, IL; Department of Neurology (N.D.), University of Pennsylvania, Philadelphia; and Parkinson's Foundation (A.N., M.N., J.B.), New York, NY.
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Nabila Dahodwala
From the Edmond J. Safra Program in Parkinson's Disease (D.G.D.L., C.M.), Movement Disorders Clinic, Krembil Brain Institute, Toronto Western Hospital; Institute of Health Policy (D.G.D.L., C.M.), Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Ontario, Canada; Division of Biostatistics and Bioinformatics (S.L., H.L.), Duke University, Durham, NC; Krembil Brain Institute (M.C.), Toronto Western Hospital, Ontario, Canada; Department of Neurology (T.L.D.), Vanderbilt University Medical Center, Nashville, TN; Department of Neurology (A.R.-Z.), Fixel Neurological Institute, University of Florida, Gainesville; Shirley Ryan Ability Lab (M.R.), Department of Physical Medicine and Rehabilitation, Department of Psychiatry and Behavioral Science, Northwestern University, Chicago, IL; Department of Neurology (N.D.), University of Pennsylvania, Philadelphia; and Parkinson's Foundation (A.N., M.N., J.B.), New York, NY.
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Anna Naito
From the Edmond J. Safra Program in Parkinson's Disease (D.G.D.L., C.M.), Movement Disorders Clinic, Krembil Brain Institute, Toronto Western Hospital; Institute of Health Policy (D.G.D.L., C.M.), Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Ontario, Canada; Division of Biostatistics and Bioinformatics (S.L., H.L.), Duke University, Durham, NC; Krembil Brain Institute (M.C.), Toronto Western Hospital, Ontario, Canada; Department of Neurology (T.L.D.), Vanderbilt University Medical Center, Nashville, TN; Department of Neurology (A.R.-Z.), Fixel Neurological Institute, University of Florida, Gainesville; Shirley Ryan Ability Lab (M.R.), Department of Physical Medicine and Rehabilitation, Department of Psychiatry and Behavioral Science, Northwestern University, Chicago, IL; Department of Neurology (N.D.), University of Pennsylvania, Philadelphia; and Parkinson's Foundation (A.N., M.N., J.B.), New York, NY.
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Marilyn Neault
From the Edmond J. Safra Program in Parkinson's Disease (D.G.D.L., C.M.), Movement Disorders Clinic, Krembil Brain Institute, Toronto Western Hospital; Institute of Health Policy (D.G.D.L., C.M.), Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Ontario, Canada; Division of Biostatistics and Bioinformatics (S.L., H.L.), Duke University, Durham, NC; Krembil Brain Institute (M.C.), Toronto Western Hospital, Ontario, Canada; Department of Neurology (T.L.D.), Vanderbilt University Medical Center, Nashville, TN; Department of Neurology (A.R.-Z.), Fixel Neurological Institute, University of Florida, Gainesville; Shirley Ryan Ability Lab (M.R.), Department of Physical Medicine and Rehabilitation, Department of Psychiatry and Behavioral Science, Northwestern University, Chicago, IL; Department of Neurology (N.D.), University of Pennsylvania, Philadelphia; and Parkinson's Foundation (A.N., M.N., J.B.), New York, NY.
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James Beck
From the Edmond J. Safra Program in Parkinson's Disease (D.G.D.L., C.M.), Movement Disorders Clinic, Krembil Brain Institute, Toronto Western Hospital; Institute of Health Policy (D.G.D.L., C.M.), Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Ontario, Canada; Division of Biostatistics and Bioinformatics (S.L., H.L.), Duke University, Durham, NC; Krembil Brain Institute (M.C.), Toronto Western Hospital, Ontario, Canada; Department of Neurology (T.L.D.), Vanderbilt University Medical Center, Nashville, TN; Department of Neurology (A.R.-Z.), Fixel Neurological Institute, University of Florida, Gainesville; Shirley Ryan Ability Lab (M.R.), Department of Physical Medicine and Rehabilitation, Department of Psychiatry and Behavioral Science, Northwestern University, Chicago, IL; Department of Neurology (N.D.), University of Pennsylvania, Philadelphia; and Parkinson's Foundation (A.N., M.N., J.B.), New York, NY.
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Connie Marras
From the Edmond J. Safra Program in Parkinson's Disease (D.G.D.L., C.M.), Movement Disorders Clinic, Krembil Brain Institute, Toronto Western Hospital; Institute of Health Policy (D.G.D.L., C.M.), Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Ontario, Canada; Division of Biostatistics and Bioinformatics (S.L., H.L.), Duke University, Durham, NC; Krembil Brain Institute (M.C.), Toronto Western Hospital, Ontario, Canada; Department of Neurology (T.L.D.), Vanderbilt University Medical Center, Nashville, TN; Department of Neurology (A.R.-Z.), Fixel Neurological Institute, University of Florida, Gainesville; Shirley Ryan Ability Lab (M.R.), Department of Physical Medicine and Rehabilitation, Department of Psychiatry and Behavioral Science, Northwestern University, Chicago, IL; Department of Neurology (N.D.), University of Pennsylvania, Philadelphia; and Parkinson's Foundation (A.N., M.N., J.B.), New York, NY.
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Racial and Ethnic Differences in Health-Related Quality of Life for Individuals With Parkinson Disease Across Centers of Excellence
Daniel Garbin Di Luca, Sheng Luo, Hongliang Liu, Melanie Cohn, Thomas L. Davis, Adoldo Ramirez-Zamora, Miriam Rafferty, Nabila Dahodwala, Anna Naito, Marilyn Neault, James Beck, Connie Marras
Neurology May 2023, 100 (21) e2170-e2181; DOI: 10.1212/WNL.0000000000207247

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Abstract

Background and Objectives Racial and ethnic minorities have been underrepresented in Parkinson disease (PD) research, limiting our understanding of treatments and outcomes across all non-White groups. The goal of this research is to investigate variability in health-related quality of life (HRQoL) and other outcomes in patients with PD across different races and ethnicities.

Methods This was a retrospective, cross-sectional and longitudinal, cohort study of individuals evaluated at PD Centers of Excellence. A multivariable regression analysis adjusted for sex, age, disease duration, Hoehn and Yahr (H&Y) stage, comorbidities, and cognitive score was used to investigate differences between racial and ethnic groups. A multivariable regression with skewed-t errors was performed to assess the individual contribution of each variable to the association of 39-item PD Questionnaire (PDQ-39) with race and ethnicity.

Results A total of 8,514 participants had at least 1 recorded visit. Most of them (90.2%) self-identified as White (n = 7,687), followed by 5.81% Hispanic (n = 495), 2% Asians (n = 170), and 1.9% African American (n = 162). After adjustment, total PDQ-39 scores were significantly higher (worse) in African Americans (28.56), Hispanics (26.62), and Asians (25.43) when compared with those in White patients (22.73, p < 0.001). This difference was also significant in most PDQ-39 subscales. In the longitudinal analysis, the inclusion of cognitive scores significantly decreased the strength of association of the PDQ-39 and race/ethnicity for minority groups. A mediation analysis demonstrated that cognition partially mediated the association between race/ethnicity and PDQ-39 scores (proportion mediated 0.251, p < 0.001).

Discussion There were differences in PD outcomes across racial and ethnic groups, even after adjustment for sex, disease duration, HY stage, age, and some comorbid conditions. Most notably, there was worse HRQoL among non-White patients when compared with White patients, which was partially explained by cognitive scores. The underlying reason for these differences needs to be a focus of future research.

Glossary

AA=
African American;
ACME=
average causal mediation effect;
AD=
Alzheimer disease;
ADL=
activities of daily living;
HRQoL=
health-related quality of life;
H&Y=
Hoehn and Yahr;
LEDD=
levodopa equivalent daily dose;
PD=
Parkinson disease;
PDQ-39=
39-item PD questionnaire;
PF-POP=
Parkinson Foundation Parkinson Outcomes Project

Footnotes

  • Go to Neurology.org/N for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.

  • Submitted and externally peer reviewed. The handling editor was Associate Editor Peter Hedera, MD, PhD.

  • CME Course: NPub.org/cmelist

  • Received July 28, 2022.
  • Accepted in final form February 16, 2023.
  • © 2023 American Academy of Neurology
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