Developed by the My PD Journey coalition – a multi-stakeholder European coalition led by the EPDA – the Parkinson’s Disease Composite Scale (PDCS) is a simple new rating scale to be used primarily by neurologists and other healthcare professionals familiar with Parkinson’s that measures the severity of symptoms experienced by people with Parkinson’s in a timely way.
We are calling on healthcare professionals working with people with Parkinson’s to use the scale and provide feedback, as we seek to increase uptake of the PDCS across Europe; the PDCS is free to use and disseminate, provided you comply to some simple guidelines.
Most existing rating scales used by neurologists currently explore different aspects of the condition, but do not offer a comprehensive view of a person’s condition quickly. The development of the new PDCS, led by Professors Fabrizio Stocchi (Italy), Fabiana Radicati (Italy) and Pablo Martinez Martin (Spain), was therefore urgently needed as it combines motor symptoms, non-motor symptoms and treatment-related complications; it is also simple and relatively fast to use.
- In collaboration with the Parkinson’s specialist neurologists who led the development of the PDCS, My PD Journey introduced the scale to an audience of more than 60 political and medical stakeholders in the European Parliament in Brussels in February 2016. It was later presented at the 20th International Congress of Parkinson’s Disease and Movement Disorders in Berlin in June 2016.
- The results of the first validation study were published in January 2018 in the European Journal of Neurology. Results of the study concluded that the PDCS appears to be a feasible, acceptable, reproducible and valid scale.
- A second and more extensive validation study, aimed at reaffirming the first study’s findings, was completed in July 2018 and published in April 2019. This study involved 22 centres and 700 patients across 14 countries.
Using the PDCS
The PDCS assesses the severity of the most frequent and difficult symptoms of Parkinson’s as follows:
- motor symptoms
- non-motor symptoms
- therapy complications
Motor symptoms are examined at the time of evaluation by a healthcare professional. Non-motor symptoms and treatment complications are evaluated for severity based on the patient’s experience over the two weeks prior to the assessment.
Throughout the scale, five severity levels anchor each item: absent, mild, moderate, severe, and very severe. While a score of 0 is considered the absence of the specific disorder, some items range from 0 to 4 and others from 0 to 7 to account for the different levels of impact each symptom has on the patient. A total score can be calculated for each domain by summing its component parts, and a total score for the PDCS can be calculated by summation of the domain scores.
Benefits of using the PDCS
- The PDCS is conducted in roughly 15-20 minutes. This makes a consultation between the person with Parkinson’s and their neurologist much faster than is usually the case, therefore freeing up time within the consultation to discuss other things important to the individual.
- It grades the relative importance of particular symptoms, taking into account people with Parkinson’s perspectives, which are important in the delivery of timely and effective treatment and care.
- The PDCS has been designed to complement – and not substitute – existing rating scales, which remain fundamental for the assessment of Parkinson’s.
- Overall, it is an easy tool that provides an immediate and comprehensive description of the patient information, which is vital for healthcare professionals and health authorities to evaluate the real needs of the patients.
My PD Journey is currently working with neurological and clinical bodies, policymakers, and patient organisations to roll out this new tool across Europe, and beyond. We are looking for healthcare professionals to use the PDCS and to give us feedback – the PDCS is free to use and disseminate, provided you comply to some simple guidelines.
Please email firstname.lastname@example.org to give us your feedback or to get involved in the roll out of the PDCS.