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

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.

Medienart:

E-Artikel

Erscheinungsjahr:

2017

Erschienen:

2017

Enthalten in:

Zur Gesamtaufnahme - volume:7

Enthalten in:

Journal of Parkinson's disease - 7(2017), 3 vom: 24., Seite 533-543

Sprache:

Englisch

Beteiligte Personen:

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

Links:

Volltext

Themen:

Activities of Daily Living
Aged
Delivery of Health Care*/economics
Delivery of Health Care*/standards
Disability Evaluation
Disease Progression
Efficiency
Female
Health Care/standards
Health Care Costs Health Status
Health Surveys
Health Surveys/Health Status Indicators
Humans
International Cooperation
Journal Article
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

Anmerkungen:

Date Completed 30.04.2018

Date Revised 09.04.2022

published: Print

Citation Status MEDLINE

doi:

10.3233/JPD-161055

funding:

Förderinstitution / Projekttitel:

PPN (Katalog-ID):

NLM273482785