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Delivering patient-centered care in Parkinson's disease: Challenges and consensus from an international panel
Affiliation:1. Department of Psychiatry, Brigham and Women''s Hospital, Boston, MA;2. The Stanley Center for Psychiatric Research at The Broad Institute, Cambridge, MA;3. Department of Neurosurgery, Johns Hopkins Hospital, Baltimore, MD;4. Department of Psychiatry and Behavioral Sciences, Johns Hopkins Hospital, Baltimore, MD;5. Department of Neurology, Johns Hopkins Hospital, Baltimore, MD;1. Department of Psychiatry and Behavioral Sciences (GMP), Johns Hopkins University School of Medicine, Baltimore;2. Department of Neurology (GMP, ZM), Johns Hopkins University School of Medicine, Baltimore;3. University of Queensland Centre for Clinical Research (ND), Faculty of Medicine, Brisbane, Australia;4. School of Psychology (ND), University of Queensland, Brisbane, Australia;5. Department of Neurology (ND), Royal Brisbane & Woman''s Hospital, Brisbane, Australia;6. Department of Psychiatry (RDD), Rutgers University, Robert Wood Johnson Medical School, Piscataway, NJ;7. Person Holistic Innovation (LyM), Las Vegas;8. Michael E. DeBakey Veterans Affairs Medical Center (LaM), Houston;9. Department of Psychiatry (LaM), Baylor College of Medicine, Houston;10. Parkinson''s Foundation (BAV), New York;11. Departments of Psychiatry and Neurology (DW), Perelman School of Medicine at the University of Pennsylvania, Philadelphia;12. Parkinson''s Disease Research (DW), Education and Clinical Center, Philadelphia Veterans Affairs Medical Center, Philadelphia;13. Cleveland Clinic Lou Ruvo Center for Brain Health (ZM), Movement Disorders Program, Las Vegas
Abstract:An international panel of movement disorders specialists explored the views and perceptions of people with Parkinson's disease (PD) about their condition and its treatment, including the potential mismatch between the clinician's view of the patient's condition and their own view of what aspects of the disease most affect their daily lives. The initiative was focused on Asian countries, so participants comprised experts in the management of PD from key centers in Asia, with additional insight provided by European and the North American movement disorders experts. Analysis of peer-reviewed publications on patient perceptions of PD and the factors that they consider important to their wellbeing identified several contributing factors to the mismatch of views, including gaps in knowledge of PD and its treatment, an understanding of the clinical heterogeneity of PD, and the importance of a multidisciplinary approach to patient care. The faculty proposed options to bridge these gaps to ensure that PD patients receive the personalized treatment they need to achieve the best possible outcomes. It was considered essential to improve patient knowledge about PD and its treatment, as well as increasing the awareness of clinicians of PD heterogeneity in presentation and treatment response. A multidisciplinary and shared-care approach to PD was needed alongside the use of patient-centered outcome measures in clinical trials and clinical practice to better capture the patient experience and improve the delivery of individualized therapy.
Keywords:Patient-centered care  International consensus  Patients' perceptions  Knowledge gaps  Patient-centered outcomes  Parkinson's disease
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