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1. Current and projected future economic burden of Parkinson’s disease in the U.S.

Author

Yang, Wenya, Hamilton, Jamie L, Kopil, Catherine, Beck, James C, Tanner, Caroline M, Albin, Roger L, Ray Dorsey, E, Dahodwala, Nabila, Cintina, Inna, Hogan, Paul, and Thompson, Ted

Subjects
Clinical Research, Brain Disorders, Parkinson's Disease, Burden of Illness, Neurosciences, Neurodegenerative, Aging, Health and social care services research, 2.4 Surveillance and distribution, Aetiology, 8.2 Health and welfare economics, Neurological, Health care economics, Neurological disorders
Abstract

Parkinson's disease (PD) is one of the world's fastest growing neurological disorders. Much is unknown about PD-associated economic burdens in the United States (U.S.) and other high-income nations. This study provides a comprehensive analysis of the economic burdens of PD in the U.S. (2017) and projections for the next two decades. Multiple data sources were used to estimate the costs of PD, including public and private administrative claims data, Medicare Current Beneficiary Survey, Medical Expenditure Panel Survey, and a primary survey (n = 4,548) designed for this study. We estimated a U.S. prevalence of approximately one million individuals with diagnosed Parkinson's disease in 2017 and a total economic burden of $51.9 billion. The total burden of PD includes direct medical costs of $25.4 billion and $26.5 billion in indirect and non-medical costs, including an indirect cost of $14.2 billion (PWP and caregiver burden combined), non-medical costs of $7.5 billion, and $4.8 billion due to disability income received by PWPs. The Medicare program bears the largest share of excess medical costs, as most PD patients are over age 65. Projected PD prevalence will be more than 1.6 million with projected total economic burden surpassing $79 billion by 2037. The economic burden of PD was previously underestimated. Our findings underscore the substantial burden of PD to society, payers, patients, and caregivers. Interventions to reduce PD incidence, delay disease progression, and alleviate symptom burden may reduce the future economic burden of PD.

Published
2020

2. Video-based Parkinson's disease assessments in a nationwide cohort of Fox Insight participants

Author

Myers, Taylor L, Tarolli, Christopher G, Adams, Jamie L, Barbano, Richard, Cristina Gil-Díaz, María, Spear, Kelsey L, Lowell, Jill, Daeschler, Margaret, Riley, Lindsey, Amondikar, Ninad, Auinger, Peggy, Marras, Connie, Tanner, Caroline M, Ray Dorsey, E, and Schneider, Ruth B

Subjects
Aging, Parkinson's Disease, Prevention, Clinical Trials and Supportive Activities, Neurosciences, Neurodegenerative, Fox Insight, Telemedicine, Brain Disorders, Clinical Research, Video-based, Behavioral and Social Science, Neurological, Parkinson’s disease
Abstract

IntroductionParkinson's disease (PD) research is hampered by slow, inefficient recruitment and burdensome in-person assessments that may be challenging to conduct in a world affected by COVID-19. Fox Insight is an ongoing prospective clinical research study that enables individuals to participate in clinical research from their own homes by completing online questionnaires. To date, over 45,000 participants with and without PD have enrolled. We sought to validate self-reported PD diagnosis in the Fox Insight cohort, assess the validity of other self-reported health information, and evaluate the willingness of participants to participate in video-based research studies.MethodsIndividuals with and without self-reported PD enrolled in Fox Insight were invited to participate in this virtual research study. Participants completed online questionnaires and two virtual visits, during which we conducted standard cognitive and motor assessments. A movement disorder expert determined the most likely diagnosis, which was compared to self-reported diagnosis.ResultsA total of 203 participants from 40 U.S. states, 159 with remote clinician-determined PD and 44 without, completed the study (59% male, mean (SD) age 65.7 (9.8)). Level of agreement between self-reported PD diagnosis in Fox Insight and clinician-determined diagnosis was very good ((kappa=0.85, 95% CI 0.76-0.94). Overall, 97.9% of participants were satisfied with the study, 98.5% were willing to participate in a future observational study with virtual visits, and 76.1% were willing to participate in an interventional trial with virtual visits.ConclusionAmong the Fox Insight cohort, self-reported diagnosis is accurate and interest in virtual research studies is high.

Published
2021

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