ArticleMovement disorders : official journal of the Movement Disorder Society2023
Adjusting for Underrepresentation Reveals Widespread Underestimation of Parkinson's Disease Symptom Burden.
Article in Movement disorders : official journal of the Movement Disorder Society, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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Who cites it
8 citing papers in PubMed.
- Implementation of a novel strategy to increase participation of Black and Hispanic people in parkinsonism research.Journal of Parkinson's disease · 2026Article
- Instrumental assessment of Sit-to-Stand in Parkinson's disease: a scoping review.Journal of neuroengineering and rehabilitation · 2026Article
- Recruitment strategies in a diverse Parkinson's disease cohort: lessons from the East London Parkinson's Disease Project.BMJ neurology open · 2026Article
- Joint network analysis of non-motor symptoms and quality of life in patients with Parkinson's disease.Frontiers in aging neuroscience · 2026Article
- Comparing Parkinson's Disease Medications Categorised by Location in New South Wales, Australia: Linking the 45 and Up Study and the Pharmaceutical Benefits Scheme (PBS) Data.The Australian journal of rural health · 2025Article
- A systematic review and meta-analysis of the prevalence of Parkinson's disease in lower to upper-middle-income countries.NPJ Parkinson's disease · 2024Article
- Genetic and phenotypic characterization of Parkinson's disease at the clinic-wide level.NPJ Parkinson's disease · 2024Article
- Qualitative Analysis of Attitudes, Knowledge, and Interest in Research of People with Parkinson's Disease and Their Care Partners Receiving Accessible Research Education.Parkinson's disease · 2023Article
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8 authors.
Funding
Abstract
backgroundClinical research is limited by underrepresentation, but the impact of underrepresentation on patient-reported outcomes in Parkinson's disease (PD) is unknown.
objectivesTo produce nationwide estimates of non-motor symptom (NMS) prevalence and PD-related quality of life (QOL) limitations while accounting for underrepresentation.
methodsWe performed a cross-sectional analysis of data from the Fox Insight (FI) study, an ongoing prospective longitudinal study of persons with self-reported PD. Using epidemiologic literature and United States (US) Census Bureau, Medicare, and National Health and Aging Trends Study data, we simulated a "virtual census" of the PD population. To compare the PD census to the FI cohort, we used logistic regression to model the odds of study participation and calculate predicted probabilities of participation for inverse probability weighting.
resultsThere are an estimated 849,488 persons living with PD in the US. Compared to 22,465 eligible FI participants, non-participants are more likely to be older, female, and non-White; live in rural regions; have more severe PD; and have lower levels of education. When these predictors were incorporated into a multivariable regression model, predicted probability of participation was much higher for FI participants than non-participants, indicating a significant difference in the underlying populations (propensity score distance 2.62). Estimates of NMS prevalence and QOL limitation were greater when analyzed using inverse probability of participation weighting compared to unweighted means and frequencies.
conclusionsPD-related morbidity may be underestimated because of underrepresentation, and inverse probability of participation weighting can be used to give greater weight to underrepresented groups and produce more generalizable estimates. © 2023 International Parkinson and Movement Disorder Society.
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