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Parkinson's composite scale

Parkinson's Composite Scale

My PD Journey has developed a new, simple composite scale to measure the severity of motor and non-motor symptoms of people with Parkinson's.

The Parkinson’s Disease Composite Scale (PDCS) follows a pilot study on 70 patients with mild-to-moderate Parkinson’s, which produced satisfactory outcomes in terms of the tool’s acceptability and hypotheses-testing. A multi-centre validation study was also carried out, involving a total of 194 patients with a mean age of 66.51 years in five countries (Australia, Italy, Romania, Sweden and the United Kingdom). The validation study looked at:

  • Feasibility and acceptability – the extent to which the PDCS could be used successfully in a clinical setting.
  • Reliability (internal consistency and stability) – how much the scale was free from random errors.
  • Validity (hypothesis-testing validation) – the extent to which the scale assessed the underlying theoretical construct it was designed to measure.
  • Precision – the scale’s ability to distinguish between small differences in symptoms.

The validation study indicated that the scale was a feasible, acceptable, reproducible, valid and precise instrument for more holistic measurement of Parkinson's disease symptoms. It highlighted some problems of internal consistency that were further assessed in the first validation study and are likely to be related to the broad constructs the scale intends to evaluate.

In collaboration with the neurologists who led the scale’s development - Professors Fabrizio Stocchi (Italy) and Pablo Martinez Martin (Spain) - My PD Journey launched the scale to an audience of over 60 political and medical stakeholders in the European Parliament in Brussels in February 2016.

Since then, a second, larger study has begun, with the aim of reaffirming the scale’s findings amongst a larger group of patients and clinicians. In this context, a high-level workshop will take place in November 2016 to discuss how the scale can be rolled out across Europe as a new tool to support self-diagnosis and clinical diagnosis.

The EPDA also presented the project to the healthcare community in the form of a poster at the 20th International Congress of Parkinson’s Disease and Movement Disorders in Berlin on 21 June.

If you would like to get involved in upcoming activities, please contact secretariat@mpdj.eu.

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Background

Work began on the PDCS in September 2014. The My PD Journey European Strategic Committee and Parkinson's Specialist Panel overwhelmingly agreed that the existing clinical scales are not comprehensive enough to deliver the right treatment to people with Parkinson's at the right time.

As a result, the project was undertaken to transform the way the disease symptoms are measured through the use of a simple, uniform and holistic scale. The scale includes depression, apathy and pain (among many other symptoms) and takes into account fluctuations in patients' symptoms.

The aim of the scale is to measure the severity of patients' Parkinson's, taking into account cardinal motor, non-motor and treatment complication symptoms. The scale is not a substitute for the other rating scales (which remain fundamental to assessing precisely other aspects of Parkinson's). But it takes into account patients' quality of life as well as the relevance of particular symptoms that are important to European healthcare systems' perspectives.

The scale gives different weights to different symptoms, according to their impact on quality of life.

Working group

Fabrizio Stocchi MD PhD
Professor of Neurology. Institute for Research and Medical Care IRCCS San Raffaele Rome. Rome, Italy

Pablo Martinez-Martin MD PhD
Instituto de Salud Carlos III, Center National of Epidemiology (CNE), Spain

Fabiana Giada Radicati, PhD
Clinical Trial Center, IRCSS San Raffaele Pisana, Rome, Italy

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