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J Parkinsons Dis. 2017;7(3):533-543. doi: 10.3233/JPD-161055.

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

Author information

1
Department of Neuroscience, Neurology, Uppsala University, Uppsala, Sweden.
2
International Consortium for Health Outcomes Measurement, Cambridge, USA.
3
Radboud University Medical Center; Donders Institute for Brain, Cognition and Behavior; Department of Neurology, Nijmegen, The Netherlands.
4
Department of Neuroscience (DNS), Padova University, Padova, Italy; Fondazione Ospedale San Camillo-I.R.C.C.S., Parkinson and Movement Disorders Unit, Venice, Italy.
5
Philipps-Universitat, Marburg, Germany.
6
The PRO-CARE Group, School of Health and Society, Kristianstad University, Kristianstad, Sweden.
7
Morton and Gloria Shulman Movement Disorders Centre and the Edmond J. Safra Program in Parkinson's Disease, University of Toronto, Toronto, Canada.
8
National Center of Epidemiology and CIBERNED, Carlos III Institute of Health, Madrid, Spain.
9
Mayo Clinic, Scottsdale, USA.
10
Skåne University Hospital, Lund, Sweden.
11
King's College, London, UK.
12
Perelman School of Medicine at the University of Pennsylvania, Philadelphia, USA.
13
Philadelphia Veterans Affairs Medical Center, Philadelphia, USA.
14
ICHOM Patient Representative, USA.
15
Mayo Clinic, Jacksonville, FL, USA.

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.

KEYWORDS:

Activities of Daily Living; Aged; Delivery of Health Care*/economics; Delivery of Health Care*/standards; Disability Evaluation; Disease Progression; Efficiency; Female; Health Care Costs Health Status; Health Care/standards; Health Surveys; Health Surveys/Health Status Indicators; Humans; International Cooperation; Male; Middle Aged; Organizational; Outcome Assessment (Health Care); Outcome and Process Assessment (Health Care)/standards; Parkinson Disease; Parkinson Disease/epidemiology; Parkinson Disease/therapy*; Parkinsonian Disorders; Psychometrics; Quality Indicators; Quality of Health Care; Quality of Life

PMID:
28671140
PMCID:
PMC5685544
DOI:
10.3233/JPD-161055
[Indexed for MEDLINE]
Free PMC Article

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