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Parkinson Disease: HELP
Articles by E. Ray Dorsey
Based on 33 articles published since 2010
(Why 33 articles?)
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Between 2010 and 2020, E. R. Dorsey wrote the following 33 articles about Parkinson Disease.
 
+ Citations + Abstracts
Pages: 1 · 2
1 Editorial Caring for the majority. 2013

Dorsey, E Ray / Willis, Allison W. · ·Mov Disord · Pubmed #23400890.

ABSTRACT: -- No abstract --

2 Editorial The benefits of exercise in Parkinson disease. 2013

Rosenthal, Liana S / Dorsey, E Ray. · ·JAMA Neurol · Pubmed #23117841.

ABSTRACT: -- No abstract --

3 Review A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies. 2019

Espay, Alberto J / Hausdorff, Jeffrey M / Sánchez-Ferro, Álvaro / Klucken, Jochen / Merola, Aristide / Bonato, Paolo / Paul, Serene S / Horak, Fay B / Vizcarra, Joaquin A / Mestre, Tiago A / Reilmann, Ralf / Nieuwboer, Alice / Dorsey, E Ray / Rochester, Lynn / Bloem, Bastiaan R / Maetzler, Walter / Anonymous2170984. ·James J. and Joan A. Gardner Family Center for Parkinson's Disease and Movement Disorders, University of Cincinnati, Cincinnati, Ohio, USA. · Center for the Study of Movement, Cognition, and Mobility, Department of Neurology, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel. · Department of Physical Therapy, Sackler Faculty of Medicine and Sagol School of Neuroscience, Tel Aviv University, Tel Aviv, Israel. · Rush Alzheimer's Disease Center and Department of Orthopedic Surgery, Rush University, Chicago, Illinois, USA. · HM CINAC, Hospital Universitario HM Puerta del Sur, Móstoles, Madrid, Spain. · Department of Molecular Neurology, University Hospital Erlangen, Friedrich-Alexander University Erlangen-Nürnberg, Erlangen, Germany. · Fraunhofer Institut for Integrated Circuits, Digital Health Pathway Research Group, Erlangen, Germany. · Department of Physical Medicine and Rehabilitation, Harvard Medical School, Boston, Massachusetts, USA. · Discipline of Physiotherapy, Faculty of Health Sciences, The University of Sydney, Sydney, New South Wales, Australia. · Department of Neurology, Oregon Health & Science University, Portland Veterans Affairs Medical System, Portland, Oregon, USA. · APDM, Inc, Portland, Oregon, USA. · Parkinson's Disease and Movement Disorders Center, Division of Neurology, Department of Medicine, The Ottawa Hospital Research Institute, University of Ottawa, Ottawa, ON, Canada. · George-Huntington-Institute, Technology Park, Muenster, Germany. · Department of Radiology, University of Muenster, Muenster, Germany. · Department of Neurodegenerative Diseases and Hertie-Institute for Clinical Brain Research, University of Tuebingen, Tuebingen, Germany. · Neuromotor Rehabilitation Research Group, Department of Rehabilitation Sciences, KU Leuven, Leuven, Belgium. · Department of Neurology, University of Rochester Medical Center, Rochester, New York, USA. · Institute of Neuroscience, Newcastle University, Newcastle Upon Tyne NE4 5PL, UK. · Newcastle upon Tyne Hospitals National Health Service Foundation Trust, Newcastle upon Tyne, UK. · Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology, Nijmegen, The Netherlands. · Department of Neurology, Christian-Albrechts University, Kiel, Germany. ·Mov Disord · Pubmed #30901495.

ABSTRACT: Obtaining reliable longitudinal information about everyday functioning from individuals with Parkinson's disease (PD) in natural environments is critical for clinical care and research. Despite advances in mobile health technologies, the implementation of digital outcome measures is hindered by a lack of consensus on the type and scope of measures, the most appropriate approach for data capture (eg, in clinic or at home), and the extraction of timely information that meets the needs of patients, clinicians, caregivers, and health care regulators. The Movement Disorder Society Task Force on Technology proposes the following objectives to facilitate the adoption of mobile health technologies: (1) identification of patient-centered and clinically relevant digital outcomes; (2) selection criteria for device combinations that offer an acceptable benefit-to-burden ratio to patients and that deliver reliable, clinically relevant insights; (3) development of an accessible, scalable, and secure platform for data integration and data analytics; and (4) agreement on a pathway for approval by regulators, adoption into e-health systems and implementation by health care organizations. We have developed a tentative roadmap that addresses these needs by providing the following deliverables: (1) results and interpretation of an online survey to define patient-relevant endpoints, (2) agreement on the selection criteria for use of device combinations, (3) an example of an open-source platform for integrating mobile health technology output, and (4) recommendations for assessing readiness for deployment of promising devices and algorithms suitable for regulatory approval. This concrete implementation guidance, harmonizing the collaborative endeavor among stakeholders, can improve assessments of individuals with PD, tailor symptomatic therapy, and enhance health care outcomes. © 2019 International Parkinson and Movement Disorder Society.

4 Review The Emerging Evidence of the Parkinson Pandemic. 2018

Dorsey, E Ray / Sherer, Todd / Okun, Michael S / Bloem, Bastiaan R. ·Department of Neurology and Center for Health+Technology, University of Rochester Medical Center, Rochester, NY, USA. · Michael J. Fox Foundation for Parkinson's Research, New York, NY, USA. · Fixel Center for Neurological Diseases, Program for Movement Disorders and Neurorestoration, Department of Neurology, University of Florida, Gainesville, FL, USA. · Radboud University Medical Center, Donders Institute for Brain, Cognition and Behavior, Department of Neurology, Nijmegen, The Netherlands. ·J Parkinsons Dis · Pubmed #30584159.

ABSTRACT: Neurological disorders are now the leading source of disability globally, and the fastest growing neurological disorder in the world is Parkinson disease. From 1990 to 2015, the number of people with Parkinson disease doubled to over 6 million. Driven principally by aging, this number is projected to double again to over 12 million by 2040. Additional factors, including increasing longevity, declining smoking rates, and increasing industrialization, could raise the burden to over 17 million. For most of human history, Parkinson has been a rare disorder. However, demography and the by-products of industrialization have now created a Parkinson pandemic that will require heightened activism, focused planning, and novel approaches.

5 Review Moving Parkinson care to the home. 2016

Dorsey, E Ray / Vlaanderen, Floris P / Engelen, Lucien Jlpg / Kieburtz, Karl / Zhu, William / Biglan, Kevin M / Faber, Marjan J / Bloem, Bastiaan R. ·Department of Neurology, University of Rochester Medical Center, Rochester, New York, USA. ray.dorsey@chet.rochester.edu. · CHET, University of Rochester Medical Center, Rochester, New York, USA. ray.dorsey@chet.rochester.edu. · Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare, Nijmegen, The Netherlands. · Radboud University Medical Center, REshape Center, Nijmegen, The Netherlands. · Department of Neurology, University of Rochester Medical Center, Rochester, New York, USA. · CHET, University of Rochester Medical Center, Rochester, New York, USA. · Radboud University Medical Center, Donders Institute for Brain, Cognition and Behavior, Department of Neurology, Nijmegen, The Netherlands. ·Mov Disord · Pubmed #27501323.

ABSTRACT: In many ways, the care of individuals with Parkinson disease does not meet their needs. Despite the documented benefits of receiving care from clinicians with Parkinson disease expertise, many patients (if not most) do not. Moreover, current care models frequently require older individuals with impaired mobility, cognition, and driving ability to be driven by overburdened caregivers to large, complex urban medical centers. Moving care to the patient's home would make Parkinson disease care more patient-centered. Demographic factors, including aging populations, and social factors, such as the splintering of the extended family, will increase the need for home-based care. Technological advances, especially the ability to assess and deliver care remotely, will enable the transition of care back to the home. However, despite its promise, this next generation of home-based care will have to overcome barriers, including outdated insurance models and a technological divide. Once these barriers are addressed, home-based care will increase access to high quality care for the growing number of individuals with Parkinson disease. © 2016 International Parkinson and Movement Disorder Society.

6 Review A review of disease progression models of Parkinson's disease and applications in clinical trials. 2016

Venuto, Charles S / Potter, Nicholas B / Dorsey, E Ray / Kieburtz, Karl. ·Center for Human Experimental Therapeutics, University of Rochester, Rochester, NY, USA. · Department of Neurology, University of Rochester, Rochester NY USA. ·Mov Disord · Pubmed #27226141.

ABSTRACT: Quantitative disease progression models for neurodegenerative disorders are gaining recognition as important tools for drug development and evaluation. In Parkinson's disease (PD), several models have described longitudinal changes in the Unified Parkinson's Disease Rating Scale (UPDRS), one of the most utilized outcome measures for PD trials assessing disease progression. We conducted a literature review to examine the methods and applications of quantitative disease progression modeling for PD using a combination of key words including "Parkinson disease," "progression," and "model." For this review, we focused on models of PD progression quantifying changes in the total UPDRS scores against time. Four different models reporting equations and parameters have been published using linear and nonlinear functions. The reasons for constructing disease progression models of PD thus far have been to quantify disease trajectories of PD patients in active and inactive treatment arms of clinical trials, to quantify and discern symptomatic and disease-modifying treatment effects, and to demonstrate how model-based methods may be used to design clinical trials. The historical lack of efficiency of PD clinical trials begs for model-based simulations in planning for studies that result in more informative conclusions, particularly around disease modification. © 2016 International Parkinson and Movement Disorder Society.

7 Review Technology in Parkinson's disease: Challenges and opportunities. 2016

Espay, Alberto J / Bonato, Paolo / Nahab, Fatta B / Maetzler, Walter / Dean, John M / Klucken, Jochen / Eskofier, Bjoern M / Merola, Aristide / Horak, Fay / Lang, Anthony E / Reilmann, Ralf / Giuffrida, Joe / Nieuwboer, Alice / Horne, Malcolm / Little, Max A / Litvan, Irene / Simuni, Tanya / Dorsey, E Ray / Burack, Michelle A / Kubota, Ken / Kamondi, Anita / Godinho, Catarina / Daneault, Jean-Francois / Mitsi, Georgia / Krinke, Lothar / Hausdorff, Jeffery M / Bloem, Bastiaan R / Papapetropoulos, Spyros / Anonymous1810866. ·James J. and Joan A. Gardner Family Center for Parkinson's disease and Movement Disorders, University of Cincinnati, Cincinnati, Ohio, USA. alberto.espay@uc.edu. · Department of Physical Medicine and Rehabilitation, Harvard Medical School, Boston, Massachusetts, USA. · Department of Neurosciences, University of California San Diego, La Jolla, CA, USA. · Department of Neurodegeneration, Hertie Institute for Clinical Brain Research (HIH), University of Tuebingen, Tübingen, Germany. · DZNE, German Center for Neurodegenerative Diseases, Tübingen, Germany. · Davis Phinney Foundation for Parkinson's, Boulder, Colorado, USA. · Department of Molecular Neurology, University Hospital Erlangen, Friedrich-Alexander University Erlangen-Nürnberg, Erlangen, Germany. · Digital Sports Group, Friedrich-Alexander University Erlangen-Nürnberg, Erlangen, Germany. · Department of Neuroscience "Rita Levi Montalcini", Città della salute e della scienza di Torino, Torino, Italy. · Department of Neurology, Oregon Health & Science University, Portland VA Medical System, Portland, Oregon. · APDM, Inc., Portland, Oregon, USA. · Morton and Gloria Movement Disorders Clinic and the Edmond J. Safra Program in Parkinson's Disease, Toronto Western Hospital, Toronto, Canada. · George-Huntington-Institute, Muenster, Germany. · Department of Radiology, University of Muenster, Muenster, Germany. · Department of Neurodegenerative Diseases and Hertie-Institute for Clinical Brain Research, University of Tuebingen, Tuebingen, Germany. · Great Lakes NeuroTechnologies, Cleveland, Ohio, USA. · Neuromotor Rehabilitation Research Group, Department of Rehabilitation Sciences, KU Leuven, Leuven, Belgium. · Global Kinetics Corporation & Florey Institute for Neuroscience and Mental Health, University of Melbourne, Parkville, Victoria, Australia. · Department of Mathematics, Aston University, Birmingham, UK. · Media Lab, Massachusetts Institute of Technology, Cambridge, Massachusetts, USA. · Department of Neurology, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA. · Department of Neurology, University of Rochester Medical Center, Rochester, New York, USA. · Michael J Fox Foundation for Parkinson's Research, New York City, New York, USA. · Department of Neurology, National Institute of Clinical Neurosciences, Budapest, Hungary. · Center of Interdisciplinary Research Egas Moniz (CiiEM), Instituto Superior de Ciências da Saúde Egas Moniz, Monte de Caparica, Portugal. · Apptomics LLC, Wellesley, Massachusetts, USA. · Medtronic Neuromodulation, Minneapolis, Minnesota, USA. · Sackler School of Medicine, Tel Aviv University and Center for the Study of Movement, Cognition, and Mobility, Neurological Institute, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel. · Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology, Nijmegen, the Netherlands. · Massachusetts General Hospital, Boston, Massachusetts, USA. ·Mov Disord · Pubmed #27125836.

ABSTRACT: The miniaturization, sophistication, proliferation, and accessibility of technologies are enabling the capture of more and previously inaccessible phenomena in Parkinson's disease (PD). However, more information has not translated into a greater understanding of disease complexity to satisfy diagnostic and therapeutic needs. Challenges include noncompatible technology platforms, the need for wide-scale and long-term deployment of sensor technology (among vulnerable elderly patients in particular), and the gap between the "big data" acquired with sensitive measurement technologies and their limited clinical application. Major opportunities could be realized if new technologies are developed as part of open-source and/or open-hardware platforms that enable multichannel data capture sensitive to the broad range of motor and nonmotor problems that characterize PD and are adaptable into self-adjusting, individualized treatment delivery systems. The International Parkinson and Movement Disorders Society Task Force on Technology is entrusted to convene engineers, clinicians, researchers, and patients to promote the development of integrated measurement and closed-loop therapeutic systems with high patient adherence that also serve to (1) encourage the adoption of clinico-pathophysiologic phenotyping and early detection of critical disease milestones, (2) enhance the tailoring of symptomatic therapy, (3) improve subgroup targeting of patients for future testing of disease-modifying treatments, and (4) identify objective biomarkers to improve the longitudinal tracking of impairments in clinical care and research. This article summarizes the work carried out by the task force toward identifying challenges and opportunities in the development of technologies with potential for improving the clinical management and the quality of life of individuals with PD. © 2016 International Parkinson and Movement Disorder Society.

8 Review The past, present, and future of telemedicine for Parkinson's disease. 2014

Achey, Meredith / Aldred, Jason L / Aljehani, Noha / Bloem, Bastiaan R / Biglan, Kevin M / Chan, Piu / Cubo, Esther / Dorsey, E Ray / Goetz, Christopher G / Guttman, Mark / Hassan, Anhar / Khandhar, Suketu M / Mari, Zoltan / Spindler, Meredith / Tanner, Caroline M / van den Haak, Pieter / Walker, Richard / Wilkinson, Jayne R / Anonymous4150794. ·Center for Human Experimental Therapeutics, University of Rochester Medical Center, Rochester, New York, USA. ·Mov Disord · Pubmed #24838316.

ABSTRACT: Travel distance, growing disability, and uneven distribution of doctors limit access to care for most Parkinson's disease (PD) patients worldwide. Telemedicine, the use of telecommunications technology to deliver care at a distance, can help overcome these barriers. In this report, we describe the past, present, and likely future applications of telemedicine to PD. Historically, telemedicine has relied on expensive equipment to connect single patients to a specialist in pilot programs in wealthy nations. As the cost of video conferencing has plummeted, these efforts have expanded in scale and scope, now reaching larger parts of the world and extending the focus from care to training of remote providers. Policy, especially limited reimbursement, currently hinders the growth and adoption of these new care models. As these policies change and technology advances and spreads, the following will likely develop: integrated care networks that connect patients to a wide range of providers; education programs that support patients and health care providers; and new research applications that include remote monitoring and remote visits. Together, these developments will enable more individuals with PD to connect to care, increase access to expertise for patients and providers, and allow more-extensive, less-expensive participation in research.

9 Article Patient Views on Telemedicine for Parkinson Disease. 2019

Spear, Kelsey L / Auinger, Peggy / Simone, Richard / Dorsey, E Ray / Francis, Jessica. ·Chicago Medical School, Rosalind Franklin University of Medicine & Science, North Chicago, IL, USA. · Center for Health + Technology, University of Rochester Medical Center, Rochester, NY, USA. · Simone Consulting Services, Silicon Valley, CA, USA. ·J Parkinsons Dis · Pubmed #31127732.

ABSTRACT: BACKGROUND: Telemedicine is increasingly used for Parkinson disease, but the perspectives of persons with Parkinson disease have not been systematically assessed. METHODS: We therefore conducted a national online survey, and 781 individuals with Parkinson disease responded. RESULTS: Of these, 76% indicated high interest, and 29% reported prior telemedicine experience. The top advantages included access to specialists (62%), convenience (60%), and time savings (59%). The most common disadvantages were the lack of hands-on care (69%), lack of intimacy (43%), and technical difficulties (37%). CONCLUSIONS: In this non-representative sample, interest in telemedicine was high but tempered by the concern for loss of high touch care.

10 Article Using Smartphones and Machine Learning to Quantify Parkinson Disease Severity: The Mobile Parkinson Disease Score. 2018

Zhan, Andong / Mohan, Srihari / Tarolli, Christopher / Schneider, Ruth B / Adams, Jamie L / Sharma, Saloni / Elson, Molly J / Spear, Kelsey L / Glidden, Alistair M / Little, Max A / Terzis, Andreas / Dorsey, E Ray / Saria, Suchi. ·Department of Computer Science, Johns Hopkins University, Baltimore, Maryland. · Department of Neurology, University of Rochester Medical Center, Rochester, New York. · Center for Health + Technology, University of Rochester Medical Center, Rochester, New York. · Department of Mathematics, Aston University, Birmingham, England. · Armstrong Institute for Patient Safety and Quality, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland. · Department of Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland. ·JAMA Neurol · Pubmed #29582075.

ABSTRACT: Importance: Current Parkinson disease (PD) measures are subjective, rater-dependent, and assessed in clinic. Smartphones can measure PD features, yet no smartphone-derived rating score exists to assess motor symptom severity in real-world settings. Objectives: To develop an objective measure of PD severity and test construct validity by evaluating the ability of the measure to capture intraday symptom fluctuations, correlate with current standard PD outcome measures, and respond to dopaminergic therapy. Design, Setting, and Participants: This observational study assessed individuals with PD who remotely completed 5 tasks (voice, finger tapping, gait, balance, and reaction time) on the smartphone application. We used a novel machine-learning-based approach to generate a mobile Parkinson disease score (mPDS) that objectively weighs features derived from each smartphone activity (eg, stride length from the gait activity) and is scaled from 0 to 100 (where higher scores indicate greater severity). Individuals with and without PD additionally completed standard in-person assessments of PD with smartphone assessments during a period of 6 months. Main Outcomes and Measures: Ability of the mPDS to detect intraday symptom fluctuations, the correlation between the mPDS and standard measures, and the ability of the mPDS to respond to dopaminergic medication. Results: The mPDS was derived from 6148 smartphone activity assessments from 129 individuals (mean [SD] age, 58.7 [8.6] years; 56 [43.4%] women). Gait features contributed most to the total mPDS (33.4%). In addition, 23 individuals with PD (mean [SD] age, 64.6 [11.5] years; 11 [48%] women) and 17 without PD (mean [SD] age 54.2 [16.5] years; 12 [71%] women) completed in-clinic assessments. The mPDS detected symptom fluctuations with a mean (SD) intraday change of 13.9 (10.3) points on a scale of 0 to 100. The measure correlated well with the Movement Disorder Society Unified Parkinson Disease's Rating Scale total (r = 0.81; P < .001) and part III only (r = 0.88; P < .001), the Timed Up and Go assessment (r = 0.72; P = .002), and the Hoehn and Yahr stage (r = 0.91; P < .001). The mPDS improved by a mean (SD) of 16.3 (5.6) points in response to dopaminergic therapy. Conclusions and Relevance: Using a novel machine-learning approach, we created and demonstrated construct validity of an objective PD severity score derived from smartphone assessments. This score complements standard PD measures by providing frequent, objective, real-world assessments that could enhance clinical care and evaluation of novel therapeutics.

11 Article Telemedicine for Parkinson's Disease: Limited Engagement Between Local Clinicians and Remote Specialists. 2018

Elson, Molly J / Stevenson, E Anna / Feldman, Blake A / Lim, Jihoon / Beck, Christopher A / Beran, Denise B / Schmidt, Peter N / Biglan, Kevin M / Simone, Richard / Willis, Allison W / Dorsey, E Ray / Boyd, Cynthia M. ·1 Center for Health + Technology, University of Rochester Medical Center , Rochester, New York. · 2 Department of Biostatistics and Computational Biology, University of Rochester , Rochester, New York. · 3 Parkinson's Foundation , Miami, Florida. · 4 Department of Neurology, University of Rochester Medical Center , Rochester, New York. · 5 Eli Lilly and Company , Indianapolis, Indiana. · 6 Simone Consulting , Sunnyvale, California. · 7 Departments of Neurology and of Biostatistics and Epidemiology, University of Pennsylvania Perelman School of Medicine , Philadelphia, Pennsylvania. · 8 Division of Geriatric Medicine and Gerontology, Department of Medicine, Johns Hopkins University School of Medicine , Baltimore, Maryland. ·Telemed J E Health · Pubmed #29297769.

ABSTRACT: INTRODUCTION: The integration of remote specialists into local care teams has not been widely evaluated. METHODS: Therefore, we surveyed clinicians whose patients with Parkinson's disease had participated in a national randomized controlled trial of video visits to determine (1) whether clinicians received recommendations from remote specialists; (2) whether those recommendations were implemented; (3) what barriers to specialty care local clinicians perceived; and (4) whether they would recommend video visits. RESULTS: Of 183 clinicians surveyed, 89 (49%) responded. Less than half received the recommendations of remote specialists, but they implemented most of the recommendations they received and found them to be beneficial. CONCLUSION: The greatest perceived barrier among respondents was distance from patient to specialist, and 40% of local clinicians would recommend video visits. As telemedicine grows, improved communication between remote specialists and local clinicians is likely needed.

12 Article The Parkinson Pandemic-A Call to Action. 2018

Dorsey, E Ray / Bloem, Bastiaan R. ·Center for Health and Technology, Department of Neurology, University of Rochester Medical Center, Rochester, New York. · Radboud University Medical Center, Donders Institute for Brain, Cognition and Behavior, Department of Neurology, Nijmegen, the Netherlands. ·JAMA Neurol · Pubmed #29131880.

ABSTRACT: -- No abstract --

13 Article Patient and Physician Perceptions of Virtual Visits for Parkinson's Disease: A Qualitative Study. 2018

Mammen, Jennifer R / Elson, Molly J / Java, James J / Beck, Christopher A / Beran, Denise B / Biglan, Kevin M / Boyd, Cynthia M / Schmidt, Peter N / Simone, Richard / Willis, Allison W / Dorsey, E Ray. ·1 University of Rochester School of Nursing , Rochester, New York. · 2 The Center for Health and Technology, University of Rochester Medical Center , Rochester, New York. · 3 Department of Biostatistics and Computational Biology, University of Rochester , Rochester, New York. · 4 National Parkinson Foundation , Miami, Florida. · 5 Department of Neurology, University of Rochester Medical Center , Rochester, New York. · 6 Division of Geriatric Medicine and Gerontology, Department of Medicine, Johns Hopkins University School of Medicine , Baltimore, Maryland. · 7 Simone Consulting , Sunnyvale, California. · 8 Departments of Neurology and of Biostatistics and Epidemiology, University of Pennsylvania Perelman School of Medicine , Philadelphia, Pennsylvania. ·Telemed J E Health · Pubmed #28787250.

ABSTRACT: Background and Introduction: Delivering care through telemedicine directly into the patient's home is increasingly feasible, valuable, and beneficial. However, qualitative data on how patients' and physicians' perceive these virtual house calls are lacking. We conducted a qualitative analysis of perceptions of these visits for Parkinson's disease to (1) determine how patients and physicians perceive virtual visits and (2) identify components contributing to positive and negative perceptions. MATERIALS AND METHODS: Qualitative survey data were collected from patients and physicians during a 12-month randomized controlled trial of virtual house calls for Parkinson's disease. Data from 149 cases were analyzed using case-based qualitative content analysis and quantitative sentiment analysis techniques. RESULTS: Positive and negative perceptions of virtual visits were driven by three themes: (1) personal benefits of the virtual visit, (2) perceived quality of care, and (3) perceived quality of interpersonal engagement. In general, participants who identified greater personal benefit, high quality of care, and good interpersonal engagement perceived visits positively. Technical problems with the software were commonly mentioned. The sentiment analysis for patients was strongly favorable (+2.5) and moderately favorable for physicians (+0.8). Physician scores were lowest (-0.3) for the ability to perform a detailed motor examination remotely. DISCUSSION: Patients and providers generally view telemedicine favorably, but individual experiences are dependent on technical issues. CONCLUSIONS: Satisfaction with and effectiveness of remote care will likely increase as common technical problems are resolved.

14 Article Changes in Verbal Fluency in Parkinson's Disease. 2017

Rosenthal, Liana S / Salnikova, Yekaterina A / Pontone, Gregory M / Pantelyat, Alexander / Mills, Kelly A / Dorsey, E Ray / Wang, Jiangxia / Wu, Samuel S / Mari, Zoltan. ·Department of Neurology Johns Hopkins University School of Medicine Baltimore Maryland USA. · Department of Psychiatry Johns Hopkins University School of Medicine Baltimore Maryland USA. · Department of Neurology University of Rochester Medical Center Rochester New York USA. · Department of Biostatistics Bloomberg School of Public Health Baltimore Maryland USA. · Department of Biostatistics College of Public Health & Health Professions and College of Medicine University of Florida Gainesville Florida USA. ·Mov Disord Clin Pract · Pubmed #30713950.

ABSTRACT: Background: The test for semantic verbal fluency is quick and easy to administer. Decreases in semantic verbal fluency would suggest executive dysfunction among individuals with Parkinson's disease (PD). Methods: The National Parkinson Foundation's Outcomes Project is a multicenter study that seeks to determine best practices in PD management. We analyzed data from the baseline and two annual follow-up visits to determine the annual rate of verbal fluency change and determinants of that change. Linear mixed modeling was used to assess relationships between verbal fluency, clinical characteristics, quality of life, and caregiver burden. Results: There were 1,322 participants with an average age of 67.3 years, of whom 37% were women. Mean baseline verbal fluency scores at baseline were 18.81 (standard deviation = 6.25). Verbal fluency scores did not change among patients who were at our cohort's average age and average PD duration (8.4 years) and who had no other associated conditions (beta = -0.02; Conclusions: Clinicians should monitor verbal fluency scores to evaluate cognitive decline among individuals with PD. Modifiable risk factors for verbal fluency changes include psychiatric symptomatology and cardiovascular disease. Clinicians may use verbal fluency testing to identify individuals at risk for decreased quality of life and increased caregiver burden, allowing for focused interventions.

15 Article National randomized controlled trial of virtual house calls for Parkinson disease. 2017

Beck, Christopher A / Beran, Denise B / Biglan, Kevin M / Boyd, Cynthia M / Dorsey, E Ray / Schmidt, Peter N / Simone, Richard / Willis, Allison W / Galifianakis, Nicholas B / Katz, Maya / Tanner, Caroline M / Dodenhoff, Kristen / Aldred, Jason / Carter, Julie / Fraser, Andrew / Jimenez-Shahed, Joohi / Hunter, Christine / Spindler, Meredith / Reichwein, Suzanne / Mari, Zoltan / Dunlop, Becky / Morgan, John C / McLane, Dedi / Hickey, Patrick / Gauger, Lisa / Richard, Irene Hegeman / Mejia, Nicte I / Bwala, Grace / Nance, Martha / Shih, Ludy C / Singer, Carlos / Vargas-Parra, Silvia / Zadikoff, Cindy / Okon, Natalia / Feigin, Andrew / Ayan, Jean / Vaughan, Christina / Pahwa, Rajesh / Dhall, Rohit / Hassan, Anhar / DeMello, Steven / Riggare, Sara S / Wicks, Paul / Achey, Meredith A / Elson, Molly J / Goldenthal, Steven / Keenan, H Tait / Korn, Ryan / Schwarz, Heidi / Sharma, Saloni / Stevenson, E Anna / Zhu, William / Anonymous2040916. ·From the Department of Biostatistics and Computational Biology (C.A.B.), University of Rochester, NY · National Parkinson Foundation (D.B.B., P.N.S.), Miami, FL · Department of Neurology (K.M.B., E.R.D., I.H.R., H.S.) and The Center for Human Experimental Therapeutics (E.R.D., M.A.A., M.J.E., S.G., H.T.K., R.K., S.S., E.A.S., W.Z.), University of Rochester Medical Center, NY · Division of Geriatric Medicine and Gerontology, Department of Medicine (C.M.B., Z.M., B.D.), Johns Hopkins University School of Medicine, Baltimore, MD · Simone Consulting (R.S.), Sunnyvale, CA · Departments of Neurology and Biostatistics and Epidemiology (A.W.W., M.S., S.R.), University of Pennsylvania Perelman School of Medicine, Philadelphia · University of California San Francisco (N.B.G., M.K., C.M.T., K.D.) · Northwest Neurological, PLLC (J. Aldred), Spokane, WA · Oregon Health and Science University (J.C., A. Fraser), Portland · Baylor College of Medicine (J.J.-S., C.H.), Houston, TX · Augusta University (J.C.M., D.M.), GA · Duke Medical Center (P.H., L.G.), Durham, NC · Massachusetts General Hospital (N.I.M., G.B.), Boston · Struthers Parkinson's Center (M.N.), Minneapolis, MN · Beth Israel Deaconess Medical Center (L.C.S.), Boston, MA · University of Miami (C.S., S.V.-P.), FL · Northwestern University (C.Z., N.O.), Evanston, IL · The Feinstein Institute for Medical Research (A. Feigin, J. Ayan), Northwell Health, Manhasset, NY · Medical University of South Carolina (C.V.), Charleston · University of Kansas Medical Center (R.P.), Kansas City · Parkinson's Institute (R.D.), Sunnyvale, CA · Mayo Clinic (A.H.), Rochester, MN · Center for Information Technology Research in the Interest of Society (CITRIS) (S.D.), University of California, Berkeley · Health Informatics Centre (S.S.R.), Karolinska Institute, Stockholm, Sweden · and PatientsLikeMe (P.W.), Derby, UK. ·Neurology · Pubmed #28814455.

ABSTRACT: OBJECTIVE: To determine whether providing remote neurologic care into the homes of people with Parkinson disease (PD) is feasible, beneficial, and valuable. METHODS: In a 1-year randomized controlled trial, we compared usual care to usual care supplemented by 4 virtual visits via video conferencing from a remote specialist into patients' homes. Primary outcome measures were feasibility, as measured by the proportion who completed at least one virtual visit and the proportion of virtual visits completed on time; and efficacy, as measured by the change in the Parkinson's Disease Questionnaire-39, a quality of life scale. Secondary outcomes included quality of care, caregiver burden, and time and travel savings. RESULTS: A total of 927 individuals indicated interest, 210 were enrolled, and 195 were randomized. Participants had recently seen a specialist (73%) and were largely college-educated (73%) and white (96%). Ninety-five (98% of the intervention group) completed at least one virtual visit, and 91% of 388 virtual visits were completed. Quality of life did not improve in those receiving virtual house calls (0.3 points worse on a 100-point scale; 95% confidence interval [CI] -2.0 to 2.7 points; CONCLUSIONS: Providing remote neurologic care directly into the homes of people with PD was feasible and was neither more nor less efficacious than usual in-person care. Virtual house calls generated great interest and provided substantial convenience. CLINICALTRIALSGOV IDENTIFIER: NCT02038959. CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that for patients with PD, virtual house calls from a neurologist are feasible and do not significantly change quality of life compared to in-person visits. The study is rated Class III because it was not possible to mask patients to visit type.

16 Article Hospital care for mental health and substance abuse conditions in Parkinson's disease. 2016

Willis, Allison W / Thibault, Dylan P / Schmidt, Peter N / Dorsey, E Ray / Weintraub, Daniel. ·Department of Neurology, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, USA. · Department of Biostatistics and Epidemiology, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, USA. · Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, Pennsylvania, USA. · Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, Pennsylvania, USA. · National Parkinson's Foundation, Miami, Florida, USA. · Department of Neurology, University of Rochester Medical Center, Rochester, New York, USA. · Department of Psychiatry, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, USA. · Parkinson's Disease and Mental Illness Research, Education and Clinical Centers, Philadelphia Veterans Affairs Medical Center, Philadelphia, Pennsylvania, USA. ·Mov Disord · Pubmed #27943472.

ABSTRACT: OBJECTIVE: The objective of this study was to examine mental health conditions among hospitalized individuals with Parkinson's disease in the United States. METHODS: This was a serial cross-sectional study of hospitalizations of individuals aged ≥60 identified in the Nationwide Inpatient Sample dataset from 2000 to 2010. We identified all hospitalizations with a diagnosis of PD, alcohol abuse, anxiety, bipolar disorder, depression, impulse control disorders, mania, psychosis, substance abuse, and attempted suicide/suicidal ideation. National estimates of each mental health condition were compared between hospitalized individuals with and without PD. Hierarchical logistic regression models determined which inpatient mental health diagnoses were associated with PD, adjusting for demographic, payer, geographic, and hospital characteristics. RESULTS: We identified 3,918,703 mental health and substance abuse hospitalizations. Of these, 2.8% (n = 104, 437) involved a person also diagnosed with PD. The majority of mental health and substance abuse patients were white (86.9% of PD vs 83.3% of non-PD). Women were more common than men in both groups (male:female prevalence ratio, PD: 0.78, 0.78-0.79, non-PD: 0.58, 0.57-0.58). Depression (adjusted odds ratio 1.32, 1.31-1.34), psychosis (adjusted odds ratio 1.25, 1.15-1.33), bipolar disorder (adjusted odds ratio 2.74, 2.69-2.79), impulse control disorders (adjusted odds ratio 1.51, 1.31-1.75), and mania (adjusted odds ratio 1.43, 1.18-1.74) were more likely among PD patients, alcohol abuse was less likely (adjusted odds ratio 0.26, 0.25-0.27). We found no PD-associated difference in suicide-related care. CONCLUSIONS: PD patients have unique patterns of acute care for mental health and substance abuse. Research is needed to guide PD treatment in individuals with pre-existing psychiatric illnesses, determine cross provider reliability of psychiatric diagnoses in PD patients, and inform efforts to improve psychiatric outcomes. © 2016 International Parkinson and Movement Disorder Society.

17 Article Communicating with participants during the conduct of multi-center clinical trials. 2016

Augustine, Erika F / Dorsey, E Ray / Hauser, Robert A / Elm, Jordan J / Tilley, Barbara C / Kieburtz, Karl K. ·Center for Human Experimental Therapeutics, University of Rochester, Rochester, NY, USA Erika_augustine@urmc.rochester.edu. · Department of Neurology, University of Rochester Medical Center, Rochester, NY, USA. · Center for Human Experimental Therapeutics, University of Rochester, Rochester, NY, USA. · University of South Florida Parkinson's Disease and Movement Disorders Center, National Parkinson Foundation Center of Excellence, Tampa, FL, USA. · Department of Public Health Sciences, Medical University of South Carolina, Charleston, SC, USA. · Department of Biostatistics, School of Public Health, University of Texas Health Science Center at Houston, Houston, TX, USA. · Clinical & Translational Science Institute, University of Rochester, Rochester, NY, USA. ·Clin Trials · Pubmed #27573636.

ABSTRACT: BACKGROUND: Communicating with trial participants is an important aspect of study conduct, relevant for informed consent and respect for participants. Group teleconferences are one means to convey information to trial participants. We used group teleconferences during an ongoing large-scale clinical trial to communicate important trial updates. METHODS: The National Institute of Neurological Disorders and Stroke Exploratory Trials in Parkinson's Disease Longitudinal Study-1 trial studied creatine for treatment of early-stage Parkinson's disease. A total of 1741 participants enrolled at 45 sites in the United States and Canada to take part in a double-blind randomized trial of 5 years of treatment with creatine versus placebo. The study leadership held two teleconferences with study participants and their caregivers after each of two pre-specified interim analyses, for a total of four teleconferences. Each agenda included a presentation by study leadership followed by an open question and answer period. Teleconference recordings were made available to all site personnel and trial participants. Recordings were reviewed and abstracted for themes and topics of the presentations, participant questions, and discussion. Number of participants, connection time for each participant, number of questions, and caller connection time were summarized using descriptive statistics. After the first teleconferences, participants who remained on the call until the end were invited to complete a voluntary, four-question survey about the teleconference process. During the second teleconferences, participants were notified of premature study closure. RESULTS: There were 258 callers for the first pair of teleconferences and 604 callers for the second pair of teleconferences. Study leaders answered more than 110 questions from study participants and caregivers across all calls. The most frequently asked question themes related to study drug, Parkinson's disease, side effects, future research, and data analysis. The initial teleconferences were well received by participants. Based on responses to the post-call survey, 98% (118/121) of participants found the call useful, 91% (115/127) were interested in future similar calls, 88% stated the call made them more likely to continue in the study (112/128), and 85% (90/106) were satisfied overall with study communications. CONCLUSION: Teleconferences provide a convenient way to communicate with trial participants and can be used during the conduct of clinical trials to convey study progress and other information. For multi-site trials, teleconferences enable participants to engage directly with study leadership and to ask questions. Survey respondents were highly satisfied with the group teleconference experience. Future research is needed to determine whether teleconferences improve participants' satisfaction with clinical trial participation and improve retention.

18 Article The mPower study, Parkinson disease mobile data collected using ResearchKit. 2016

Bot, Brian M / Suver, Christine / Neto, Elias Chaibub / Kellen, Michael / Klein, Arno / Bare, Christopher / Doerr, Megan / Pratap, Abhishek / Wilbanks, John / Dorsey, E Ray / Friend, Stephen H / Trister, Andrew D. ·Sage Bionetworks, Seattle, Washington 98109, USA. · Center for Human Experimental Therapeutics, University of Rochester Medical Center, Rochester, New York 14642, USA. ·Sci Data · Pubmed #26938265.

ABSTRACT: Current measures of health and disease are often insensitive, episodic, and subjective. Further, these measures generally are not designed to provide meaningful feedback to individuals. The impact of high-resolution activity data collected from mobile phones is only beginning to be explored. Here we present data from mPower, a clinical observational study about Parkinson disease conducted purely through an iPhone app interface. The study interrogated aspects of this movement disorder through surveys and frequent sensor-based recordings from participants with and without Parkinson disease. Benefitting from large enrollment and repeated measurements on many individuals, these data may help establish baseline variability of real-world activity measurement collected via mobile phones, and ultimately may lead to quantification of the ebbs-and-flows of Parkinson symptoms. App source code for these data collection modules are available through an open source license for use in studies of other conditions. We hope that releasing data contributed by engaged research participants will seed a new community of analysts working collaboratively on understanding mobile health data to advance human health.

19 Article National Randomized Controlled Trial of Virtual House Calls for People with Parkinson's Disease: Interest and Barriers. 2016

Dorsey, E Ray / Achey, Meredith A / Beck, Christopher A / Beran, Denise B / Biglan, Kevin M / Boyd, Cynthia M / Schmidt, Peter N / Simone, Richard / Willis, Allison W / Galifianakis, Nicholas B / Katz, Maya / Tanner, Caroline M / Dodenhoff, Kristen / Ziman, Nathan / Aldred, Jason / Carter, Julie / Jimenez-Shahed, Joohi / Hunter, Christine / Spindler, Meredith / Mari, Zoltan / Morgan, John C / McLane, Dedi / Hickey, Patrick / Gauger, Lisa / Richard, Irene Hegeman / Bull, Michael T / Mejia, Nicte I / Bwala, Grace / Nance, Martha / Shih, Ludy / Anderson, Lauren / Singer, Carlos / Zadikoff, Cindy / Okon, Natalia / Feigin, Andrew / Ayan, Jean / Vaughan, Christina / Pahwa, Rajesh / Cooper, Jessica / Webb, Sydney / Dhall, Rohit / Hassan, Anhar / Weis, Delana / DeMello, Steven / Riggare, Sara S / Wicks, Paul / Smith, Joseph / Keenan, H Tait / Korn, Ryan / Schwarz, Heidi / Sharma, Saloni / Stevenson, E Anna / Zhu, William. ·1 Department of Neurology, Rochester, New York. · 2 CHET, University of Rochester Medical Center , Rochester, New York. · 3 Duke University School of Medicine , Durham, North Carolina. · 4 Department of Biostatistics, University of Rochester , Rochester, New York. · 5 National Parkinson Foundation , Miami, Florida. · 6 Division of Geriatric Medicine and Gerontology, Department of Medicine, Johns Hopkins University School of Medicine , Baltimore, Maryland. · 7 Simone Consulting , Sunnyvale, California. · 8 Department of Neurology, Philadelphia, Pennsylvania. · 9 Department of Biostatistics and Epidemiology, University of Pennsylvania , Philadelphia, Pennsylvania. · 10 Department of Neurology, University of California San Francisco , San Francisco, California. · 11 Northwest Neurological, PLLC , Spokane, Washington. · 12 Parkinson Center and Movement Disorders Program, Oregon Health and Science University , Portland, Oregon. · 13 Department of Neurology, Baylor College of Medicine , Houston, Texas. · 14 Department of Neurology and Neurosurgery, Johns Hopkins University , Baltimore, Maryland. · 15 Department of Neurology, Georgia Regents University , Augusta, Georgia . · 16 Department of Neurology, Duke Medical Center , Durham, North Carolina. · 17 Department of Neurology, Massachusetts General Hospital , Boston, Massachusetts. · 18 Struthers Parkinson's Center , Golden Valley, Minnesota. · 19 Department of Neurology, Beth Israel Deaconess Medical Center , Boston, Massachusetts. · 20 Department of Neurology, University of Miami , Miami, Florida. · 21 Department of Neurology, Northwestern University , Evanston, Illinois. · 22 The Feinstein Institute for Medical Research, North Shore-LIJ Health System , Manhasset, New York. · 23 Department of Neurology, Medical University of South Carolina , Charleston, South Carolina. · 24 Department of Neurology, University of Kansas Medical Center , Kansas City, Kansas. · 25 Parkinson's Institute , Sunnyvale, California. · 26 Department of Neurology, Mayo Clinic , Rochester, Minnesota. · 27 Center for Information Technology Research in the Interest of Society, University of California , Berkeley, California. · 28 Health Informatics Centre, Karolinska Institute , Stockholm, Sweden . · 29 PatientsLikeMe, Cambridge, Massachusetts . · 30 West Health Institute , La Jolla, California. ·Telemed J E Health · Pubmed #26886406.

ABSTRACT: BACKGROUND: Delivering specialty care remotely directly into people's homes can enhance access for and improve the healthcare of individuals with chronic conditions. However, evidence supporting this approach is limited. MATERIALS AND METHODS: Connect.Parkinson is a randomized comparative effectiveness study that compares usual care of individuals with Parkinson's disease in the community with usual care augmented by virtual house calls with a Parkinson's disease specialist from 1 of 18 centers nationally. Individuals in the intervention arm receive four virtual visits from a Parkinson's disease specialist over 1 year via secure, Web-based videoconferencing directly into their homes. All study activities, including recruitment, enrollment, and assessments, are conducted remotely. Here we report on interest, feasibility, and barriers to enrollment in this ongoing study. RESULTS: During recruitment, 11,734 individuals visited the study's Web site, and 927 unique individuals submitted electronic interest forms. Two hundred ten individuals from 18 states enrolled in the study from March 2014 to June 2015, and 195 were randomized. Most participants were white (96%) and college educated (73%). Of the randomized participants, 73% had seen a Parkinson's disease specialist within the previous year. CONCLUSIONS: Among individuals with Parkinson's disease, national interest in receiving remote specialty care directly into the home is high. Remote enrollment in this care model is feasible but is likely affected by differential access to the Internet.

20 Article Virtual research visits and direct-to-consumer genetic testing in Parkinson's disease. 2015

Dorsey, E Ray / Darwin, Kristin C / Mohammed, Samara / Donohue, Sean / Tethal, Alyssa / Achey, Meredith A / Ward, Susan / Caughey, Elaine / Conley, Emily D / Eriksson, Nicholas / Ravina, Bernard. ·Center for Human Experimental Therapeutics, University of Rochester, USA. · Department of Neurology, University of Rochester Medical Center, USA. · Johns Hopkins School of Medicine, USA. · Coursera, Mountain View CA, USA. · Johns Hopkins University, USA. · Voyager Therapeutics, 75 Sidney Street, Cambridge, MA 02139, USA. ·Digit Health · Pubmed #29942542.

ABSTRACT: Objective: The purpose of this study was to conduct a proof-of-concept study to evaluate remote recruitment and assessment of individuals ("virtual research visits") with Parkinson's disease who have pursued direct-to-consumer genetic testing. Methods: Participants in 23andMe's "Parkinson's Research Community" were contacted by 23andMe. Fifty willing participants living in 23 states underwent a remote, standardized assessment including cognitive and motor tests by a neurologist via video conferencing and then completed a survey. Primary outcomes assessed were (a) proportion of participants who completed the remote assessments; (b) level of agreement (using Cohen's kappa coefficient) of patient-reported data with that of a neurologist; and (c) interest in future virtual research visits. Results: The self-reported diagnosis of Parkinson's disease was confirmed in all cases ( Conclusion: Remote clinical assessments of individuals with known genotypes were conducted nationally and rapidly from a single site, confirmed self-reported diagnosis, and were received favorably. Direct-to-consumer genetic testing and virtual research visits together may enable characterization of genotype and phenotype for geographically diverse populations.

21 Article Feasibility of Virtual Research Visits in Fox Trial Finder. 2015

Dorsey, E Ray / Wagner, Joseph D / Bull, Michael T / Rizzieri, Ashley / Grischkan, Justin / Achey, Meredith A / Sherer, Todd / Chowdhury, Sohini / Meunier, Claire / Cappelletti, Lily / Rocker, Charlotte / Richard, Irene H / Schwarz, Heidi / Kang, Gail / Ahmad, Stacy H / Biemiller, Rachel A / Biglan, Kevin M. ·Department of Neurology, University of Rochester Medical Center, Rochester, New York, United States. · CHET, University of Rochester Medical Center, Rochester, New York, United States. · University of Rochester, Rochester, New York, United States. · University of Rochester School of Medicine and Dentistry, Rochester, New York, United States. · The Michael J. Fox Foundation For Parkinson's Research, New York, United States. · University of California Berkeley, Berkeley, California, United States. · Department of Cell Biology and Pathology, Thomas Jefferson University, Philadelphia, PA, United States. ·J Parkinsons Dis · Pubmed #26406130.

ABSTRACT: BACKGROUND: Fox Trial Finder is an online registry for individuals with and without Parkinson disease (PD) interested in participating in PD research. However, distance or disability could prevent such individuals from participating in traditional, clinic-based research at major centers. OBJECTIVE: Use videoconferencing to connect participants to specialists to: (1) demonstrate feasibility of virtual research visits within this population (2) collect phenotypic data of the participants, (3) validate self-reported diagnosis, and (4) gauge interest in virtual research visits. METHODS: We solicited volunteers throughout the United States through Fox Trial Finder. Interested individuals with PD provided consent, were given web cameras if needed, completed baseline surveys, and downloaded videoconferencing software remotely. Participants had a test connection and assessment appointment which included the Montreal Cognitive Assessment (MoCA), then a virtual research visit with a neurologist who reviewed their history and assessed their PD using a modified Movement Disorders Society Unified Parkinson's Disease Rating Scale. Neurologists assessed PD diagnosis and symptomatology. Physicians and participants were surveyed about their experience. RESULTS: Of 204 individuals who consented, 166 (81% ) individuals from 39 states completed all visits. The mean age was 62 and mean disease duration was 8.0 years. Mean MoCA score was 26.5, and mean modified MDS-UPDRS motor score was 22.8 (out of a possible 124). Neurologists judged PD as the most likely diagnosis in 97% of cases. Overall satisfaction with the visits was 79% (satisfied or very satisfied) among neurologists and 93% among participants. CONCLUSIONS: Through virtual research visits, neurologists engaged, characterized, and validated self-reported diagnosis in individuals with PD over a broad geography. This model may facilitate future research participation.

22 Article Nursing home and end-of-life care in Parkinson disease. 2015

Safarpour, Delaram / Thibault, Dylan P / DeSanto, Cori L / Boyd, Cynthia M / Dorsey, E Ray / Racette, Brad A / Willis, Allison W. ·From the Departments of Neurology (D.S., D.P.T., A.W.W.) and Biostatistics and Epidemiology (A.W.W.), Center for Clinical Epidemiology and Biostatistics (D.S., A.W.W.), and Leonard Davis Institute of Health Economics (A.W.W.), University of Pennsylvania Perelman School of Medicine, Philadelphia · Department of Neurology (C.L.D., B.A.R.), Washington University School of Medicine, St. Louis, MO · Departments of Medicine (C.M.B.) and Health Policy and Management (C.M.B.), Johns Hopkins School of Medicine, Baltimore, MD · Department of Neurology (E.R.D.), Center of Human Experimental Therapeutics, University of Rochester Medical Center, NY · and School of Public Health (B.A.R.), Faculty of Health Sciences, University of the Witwatersrand, Parktown, South Africa. ·Neurology · Pubmed #26138947.

ABSTRACT: OBJECTIVE: To examine long-term care facility (LTCF or nursing home) use and end-of-life care for individuals with Parkinson disease (PD). METHODS: In this nationwide retrospective cohort study, we compared LTCF and hospice utilization among Medicare beneficiaries diagnosed with PD by demographic, clinical, and physician characteristics. We also examined the impact of outpatient neurologist care for institutionalized patients with PD on end-of-life care. RESULTS: We identified 469,055 individuals with PD who received Medicare benefits in 2002. Nearly 25% (more than 100,000 in total) resided in an LTCF. Women with PD had greater odds of nursing facility residence (adjusted odds ratio [AOR] 1.34, 95% confidence interval [CI] 1.30-1.38) compared with men. Black individuals with PD were 34% more likely than white individuals to reside in an LTCF (AOR 1.34, 95% CI 1.30-1.38), contrary to the race patterns typically observed for LTCF use. Hip fracture (AOR 2.10, 95% CI 2.04-2.15) and dementia (AOR 4.06, 95% CI 4.00-4.12) were the strongest clinical predictors of LTCF placement. Only 33% (n = 38,334) of nursing home residents with PD had outpatient neurologist care. Eighty-four percent (n = 80,877) of LTCF residents with PD died by December 31, 2005. Hospice utilization varied little by race and sex. LTCF residents who had outpatient neurologist care were twice as likely to utilize hospice services before death (AOR 2.35, 95% CI 2.24-2.47). CONCLUSIONS AND RELEVANCE: A large proportion of the Medicare PD population resides in an LTCF. There is substantial unmet need for palliative care in the PD population. Increased efforts to provide specialist care to dependent individuals with PD may improve end-of-life care.

23 Article Detecting and monitoring the symptoms of Parkinson's disease using smartphones: A pilot study. 2015

Arora, S / Venkataraman, V / Zhan, A / Donohue, S / Biglan, K M / Dorsey, E R / Little, M A. ·Nonlinearity and Complexity Research Group, Aston University, Birmingham, United Kingdom; Somerville College, University of Oxford, Oxford, United Kingdom. · Duke University School of Medicine, Durham, NC, United States. · Johns Hopkins University, Baltimore, MD, United States. · Department of Neurology, University of Rochester Medical Center, Rochester, NY, United States. · Department of Neurology, University of Rochester Medical Center, Rochester, NY, United States; CHET, University of Rochester Medical Center, Rochester, NY, United States. Electronic address: ray.dorsey@chet.rochester.edu. · Nonlinearity and Complexity Research Group, Aston University, Birmingham, United Kingdom; Media Lab, Massachusetts Institute of Technology, Boston, MA, United States. ·Parkinsonism Relat Disord · Pubmed #25819808.

ABSTRACT: BACKGROUND: Remote, non-invasive and objective tests that can be used to support expert diagnosis for Parkinson's disease (PD) are lacking. METHODS: Participants underwent baseline in-clinic assessments, including the Unified Parkinson's Disease Rating Scale (UPDRS), and were provided smartphones with an Android operating system that contained a smartphone application that assessed voice, posture, gait, finger tapping, and response time. Participants then took the smart phones home to perform the five tasks four times a day for a month. Once a week participants had a remote (telemedicine) visit with a Parkinson disease specialist in which a modified (excluding assessments of rigidity and balance) UPDRS performed. Using statistical analyses of the five tasks recorded using the smartphone from 10 individuals with PD and 10 controls, we sought to: (1) discriminate whether the participant had PD and (2) predict the modified motor portion of the UPDRS. RESULTS: Twenty participants performed an average of 2.7 tests per day (68.9% adherence) for the study duration (average of 34.4 days) in a home and community setting. The analyses of the five tasks differed between those with Parkinson disease and those without. In discriminating participants with PD from controls, the mean sensitivity was 96.2% (SD 2%) and mean specificity was 96.9% (SD 1.9%). The mean error in predicting the modified motor component of the UPDRS (range 11-34) was 1.26 UPDRS points (SD 0.16). CONCLUSION: Measuring PD symptoms via a smartphone is feasible and has potential value as a diagnostic support tool.

24 Article Virtual house calls for Parkinson disease (Connect.Parkinson): study protocol for a randomized, controlled trial. 2014

Achey, Meredith A / Beck, Christopher A / Beran, Denise B / Boyd, Cynthia M / Schmidt, Peter N / Willis, Allison W / Riggare, Sara S / Simone, Richard B / Biglan, Kevin M / Dorsey, E Ray. ·Division of Geriatric Medicine and Gerontology, Department of Medicine, Johns Hopkins University School of Medicine, 5200 Eastern Avenue, MFL 7th Floor, Center Tower, Baltimore, MD 21224, USA. cyboyd@jhmi.edu. ·Trials · Pubmed #25431346.

ABSTRACT: BACKGROUND: Interest in improving care for the growing number of individuals with chronic conditions is rising. However, access to care is limited by distance, disability, and distribution of doctors. Small-scale studies in Parkinson disease, a prototypical chronic condition, have suggested that delivering care using video house calls is feasible, offers similar clinical outcomes to in-person care, and reduces travel burden. METHODS/DESIGN: We are conducting a randomized comparative effectiveness study (Connect.Parkinson) comparing usual care in the community to usual care augmented by virtual house calls with a Parkinson disease specialist. Recruitment is completed centrally using online advertisements and emails and by contacting physicians, support groups, and allied health professionals. Efforts target areas with a high proportion of individuals not receiving care from neurologists. Approximately 200 individuals with Parkinson disease and their care partners will be enrolled at 20 centers throughout the United States and followed for one year. Participants receive educational materials, then are randomized in a 1:1 ratio to continue their usual care (control arm) or usual care and specialty care delivered virtually (intervention arm). Care partners are surveyed about their time and travel burden and their perceived caregiver burden. Participants are evaluated via electronic survey forms and videoconferencing with a blinded independent rater at baseline and at 12 months. All study activities are completed remotely.The primary outcomes are: (1) feasibility, as measured by the proportion of visits completed, and (2) quality of life, as measured by the 39-item Parkinson's Disease Questionnaire. Secondary outcomes include measures of clinical benefit, quality of care, time and travel burden, and caregiver burden. DISCUSSION: Connect.Parkinson will evaluate the feasibility and effectiveness of using technology to deliver care into the homes of individuals with Parkinson disease. The trial may serve as a model for increasing access and delivering patient-centered care at home for individuals with chronic conditions. TRIAL REGISTRATION: This trial was registered on clinicaltrials.gov on January 8, 2014 [NCT02038959].

25 Article An update on Parkinson's disease: improving patient outcomes. 2014

Kremens, Daniel / Hauser, Robert A / Dorsey, E Ray. ·Assistant Professor of Neurology, Jefferson Medical College of Thomas Jefferson University, Philadelphia, PA. · Professor of Neurology, Molecular Pharmacology and Physiology, Director, Parkinson's Disease and Movement Disorders Center, University of South Florida, Tampa, FL. · Associate Professor of Neurology, Director, The Johns Hopkins Parkinson's Disease and Movement Disorders Center, Baltimore, MD. ·Am J Med · Pubmed #24384115.

ABSTRACT: Neurologists are faced with many challenges in caring for patients with Parkinson's disease (PD). This chronic, long-term illness that affects at least one million people in the United States requires a coordinated healthcare partnership between the physician and the patient. The importance of early diagnosis is essential to delaying disease progression and early diagnosis and intervention may be aided by recent advances in biomarkers, genomics, and imaging. A misdiagnosis or late diagnosis will lead to deteriorating patient health. Additionally, physicians should incorporate current guidelines into their treatment strategies, and awareness of the reasoning behind these guidelines is critical for appropriate use. Physicians should be up to date on identifying the most appropriate therapies based on emerging science and disease staging, and should implement patient education into their practice. Due to limitations for currently available therapies, adjunctive therapies may lead to improved outcomes in patients with PD. The use of multiple therapies can improve myriad symptoms, more so than a monotherapy. Knowledge of these therapies is critical to achieving best outcomes in patients with PD. This webcast will discuss the current challenges with PD clinical practice, clinical features of PD, the impact of treatment, future treatments for PD and improving patient outcomes.

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