A Consensus Set of Outcomes for Parkinson's Disease from the International Consortium for Health Outcomes Measurement

Paul De Roos, Bastiaan R. Bloem, Thomas A. Kelley, Angelo Antonini, Richard Dodel, Peter Hagell, Connie Marras, Pablo Martinez-Martin, Shyamal H. Mehta, Per Odin, Kallol Ray Chaudhuri, Daniel Weintraub, Bil Wilson, Ryan J. Uitti

Research output: Contribution to journalArticle

21 Scopus citations

Abstract

Background: Parkinson's disease (PD) is a progressive neurodegenerative condition that is expected to double in prevalence due to demographic shifts. Value-based healthcare is a proposed strategy to improve outcomes and decrease costs. To move towards an actual value-based health care system, condition-specific outcomes that are meaningful to patients are essential. Objective: Propose a global consensus standard set of outcome measures for PD. Methods: Established methods for outcome measure development were applied, as outlined and used previously by the International Consortium for Health Outcomes Measurement (ICHOM). An international group, representing both patients and experts from the fields of neurology, psychiatry, nursing, and existing outcome measurement efforts, was convened. The group participated in six teleconferences over a six-month period, reviewed existing data and practices, and ultimately proposed a standard set of measures by which patients should be tracked, and how often data should be collected. Results: The standard set applies to all cases of idiopathic PD, and includes assessments of motor and non-motor symptoms, ability to work, PD-related health status, and hospital admissions. Baseline demographic and clinical variables are included to enable case mix adjustment. Conclusions: The Standard Set is now ready for use and pilot testing in the clinical setting. Ultimately, we believe that using the set of outcomes proposed here will allow clinicians and scientists across the world to document, report, and compare PD-related outcomes in a standardized fashion. Such international benchmarks will improve our understanding of the disease course and allow for identification of 'best practices', ultimately leading to better informed treatment decisions.

Original languageEnglish (US)
Pages (from-to)533-543
Number of pages11
JournalJournal of Parkinson's disease
Volume7
Issue number3
DOIs
StatePublished - 2017

ASJC Scopus subject areas

  • Clinical Neurology
  • Cellular and Molecular Neuroscience

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    De Roos, P., Bloem, B. R., Kelley, T. A., Antonini, A., Dodel, R., Hagell, P., Marras, C., Martinez-Martin, P., Mehta, S. H., Odin, P., Chaudhuri, K. R., Weintraub, D., Wilson, B., & Uitti, R. J. (2017). A Consensus Set of Outcomes for Parkinson's Disease from the International Consortium for Health Outcomes Measurement. Journal of Parkinson's disease, 7(3), 533-543. https://doi.org/10.3233/JPD-161055