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.
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