Does Black vs. White race affect practitioners’ appraisal of Parkinson’s disease?

Harris, Shana; Narayanan, Nandakumar S.; Tranel, Daniel

doi:10.1038/s41531-023-00549-2

Cited by 3 publications

(2 citation statements)

References 49 publications

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“…Indeed, it has been suggested that there may be a practitioner bias that leads to reduced diagnoses of PD among Black individuals. 35 As such, it is possible that race discrepancies in PD prevalence may re ect actual differences in the frequency of PD cases or a bias in diagnosis due to other, systemic factors, or both. Indeed, we recognise that our results may be mediated by demographic, environmental, social and/or systematic factors that could leave certain groups more vulnerable to PD risk.…”

Section: Discussionmentioning

confidence: 99%

Race and Ethnic Background in Parkinson’s Disease: A Literature Review and Risk Factor Analysis

Siddiqi,

Li,

Ortiz

et al. 2023

Preprint

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Importance: Parkinson’s disease (PD) is a common, neurodegenerative disorder. Inclusion of ethno-racial groups is critical to expanding current understanding of PD risk factors, pathogenesis, and increasing generalizability across diverse research populations. Presently, there is a lack of large-scale studies that evaluate links between race/ethnicity and PD risk. Objective: (1) Using a literature review, we aimed to evaluate and assess the inclusion of ethno-racial factors in studies on PD risk. (2) Using a cross-sectional study, we aimed to validate findings in the literature and compare the relationship between PD prevalence, race, and risk factors. Design, Setting and Participants: Targeted literature review: A PubMED search was conducted to identify studies published 2000-2023 detailing PD risk and epidemiology. Cross-sectional analysis: data downloaded in March 2022 from the Fox Insight study cohort was analysed. Exposures: Literature review: inclusion of race/ethnicity. Cross-sectional analysis: current PD diagnosis, sex, age of diagnosis, smoking status, family history of PD, select DNA markers, history of anosmia, depression and anxiety. Main Outcomes and Measures: Literature review: accounting for race/ethnicity in the data set. Cross-sectional analysis: logistic regression modelling was used to determine the prevalence odds ratios for PD, pairwise comparisons of age at PD diagnosis across race were conducted and minor allele frequencies were calculated. Results: Literature review: only 22 of 497 (4.4%) articles reviewed included ethno-racial factors as an integral part of their analysis. Cross-sectional analysis: out of the 48,566 respondents, 22,776 were male (46.9%), the mean age was 65.8 (SD=12.1), 34,859 (71.7%) respondents had a diagnosis of PD, 45,712 (94.1%) self-identified with the White race. Multiracial respondents had 22% reduced odds of PD (POR=0.78 95% CI [0.65-0.93]) compared to the White race group, adjusted for age, sex and income. Race did not impact the association between PD prevalence and known risk factors. Conclusions and Relevance: Our literature search revealed that race/ethnicity has been understudied in the context of PD risk; despite this, our data analysis demonstrated that race groups differ in prevalence. To best inform understanding of PD pathogenesis and future care, further analyses are needed with consideration of access to care and other determinants of health.

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Section: Discussionmentioning

confidence: 99%

Race and Ethnic Background in Parkinson’s Disease: A Literature Review and Risk Factor Analysis

Siddiqi,

Li,

Ortiz

et al. 2023

Preprint

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“…It is also established that PD diagnoses are often delayed in Black adults and occur at a greater disease severity [ 52–54 ]. There are multiple proposed contributors to this, including healthcare access/disparities [ 52–54, 56 ], distrust of the medical system [ 52, 53 ], more comorbidities in Black adults [ 54 ], earlier age of mortality in Black adults [ 53 ], perceptions of aging (i.e., viewing parkinsonism as part of normal aging) [ 52, 53, 57 ], clinician biases (in diagnosis, treatment) [ 52, 53 ], and clinician biases related to assessing hypomimia/facial expression [ 58 ]. However, there is also community-based research suggesting that parkinsonian signs may be less frequent in older Black adults compared to older White adults [ 59 ].…”

Section: The Intersection Of Race and Core Features Of Dlbmentioning

confidence: 99%

Under-Diagnosis of Dementia with Lewy Bodies in Individuals Racialized as Black: Hypotheses Regarding Potential Contributors

Armstrong,

Barnes

2024

Journal of Alzheimer’s Disease

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Dementia with Lewy bodies (DLB) is one of the most common degenerative dementias after Alzheimer’s disease (AD) dementia. DLB is under-diagnosed across populations but may be particularly missed in older Black adults. The object of this review was to examine key features of DLB and potential associations with race in order to hypothesize why DLB may be under-diagnosed in Black adults in the U.S. In terms of dementia, symptoms associated with high rates of co-pathology (e.g., AD, vascular disease) in older Black adults may obscure the clinical picture that might suggest Lewy body pathology. Research also suggests that clinicians may be predisposed to give AD dementia diagnoses to Black adults, potentially missing contributions of Lewy body pathology. Hallucinations in Black adults may be misattributed to AD or primary psychiatric disease rather than Lewy body pathology. Research on the prevalence of REM sleep behavior in diverse populations is lacking, but REM sleep behavior disorder could be under-diagnosed in Black adults due to sleep patterns or reporting by caregivers who are not bed partners. Recognition of parkinsonism could be reduced in Black adults due to clinician biases, cultural effects on self-report, and potentially underlying differences in the frequency of parkinsonism. These considerations are superimposed on structural and systemic contributions to health (e.g., socioeconomic status, education, structural racism) and individual-level social exposures (e.g., social interactions, discrimination). Improving DLB recognition in Black adults will require research to investigate reasons for diagnostic disparities and education to increase identification of core symptoms in this population.

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An Ethnographic Study of Patient Life Experience in Early-Stage Parkinson’s Disease in the United States and Germany

Carmody,

Park,

Bennett

et al. 2024

Neurol Ther

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Introduction Existing qualitative research on early-stage Parkinson’s disease draws on patients’ reported disease experience, aiming to capture the symptoms and impacts most relevant to patients living with the disease. As a complement to this research, the present study investigated the patient experience of early-stage Parkinson’s disease from a holistic, ethnographic perspective. We explored the attitudes, beliefs, and social structures that shape how people understand and adapt to life with early-stage Parkinson’s disease. Methods Researchers interviewed 30 people with early-stage Parkinson’s disease, 10 relatives, and 10 neurologists and movement disorder specialists in the USA and Germany. Many of these interviews took place in-person, allowing researchers to spend time in participants’ homes and witness their daily lives. A multidisciplinary team of social scientists, clinical researchers, and patient organization representatives led the mixed-methods study design and analysis. In-depth ethnographic interviews yielded qualitative insights, with a quantitative survey following to assess their prevalence in a larger sample of 150 patients. Results In addition to developing a patient life experience pathway of early-stage Parkinson’s disease, we identified five key thematic findings that provide insight into how the clinical features of the disease become meaningful to patients on the context of their daily lives, family relations, and subjective well-being: (1) People with early-stage Parkinson’s disease start coming to terms with their disease before receiving a medical diagnosis; (2) Acceptance is not a finalized achievement, but a cyclical process; (3) People with early-stage Parkinson’s disease “live in the moment” to make the future more manageable; (4) Slowing disease progression is an important goal driving the actions of people with early-stage Parkinson’s; and (5) People with early-stage Parkinson’s disease value information that is grounded in lived experience and relevant to their stage of disease progression. Conclusion This holistic, ethnographic approach to patient life experience provided five key thematic findings that complement insights from qualitative and quantitative datasets on early-stage Parkinson’s disease. An enhanced understanding of how early-stage Parkinson’s symptoms impact patients’ health-related quality of life and their broader social lives can help us better understand how patients make decisions about their usage of healthcare services and therapies. Supplementary Information The online version contains supplementary material available at 10.1007/s40120-024-00632-7.

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Does Black vs. White race affect practitioners’ appraisal of Parkinson’s disease?

Cited by 3 publications

References 49 publications

Race and Ethnic Background in Parkinson’s Disease: A Literature Review and Risk Factor Analysis

Race and Ethnic Background in Parkinson’s Disease: A Literature Review and Risk Factor Analysis

Under-Diagnosis of Dementia with Lewy Bodies in Individuals Racialized as Black: Hypotheses Regarding Potential Contributors

An Ethnographic Study of Patient Life Experience in Early-Stage Parkinson’s Disease in the United States and Germany

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