New scales to measure mental health symptoms in Parkinson's disease

Parkinson’s disease is the second most common neurodegenerative disorder globally, with rapidly escalating prevalence given the ageing population.

Award-winning research led by our team established that non-motor symptoms (NMS) of Parkinson's disease including depression, anxiety, and hallucinations, are now recognised as one of the key reasons people with Parkinson's disease have poor quality of life. Treatment for non-motor symptoms in Parkinson's disease is a massive unmet need and meeting it is hindered by a lack of ways of assessing these symptoms.

First ever validated tools for non-motor symptoms

A team at the National Institute for Health Research (NIHR) Maudsley Biomedical Research Centre, together with an international consortium and supported by our NIHR Parkinson's disease expert patient group (CRISP), developed the first ever validated tools for bedside assessment of non-motor symptoms in Parkinson's disease.

It is now in worldwide use and translated into 55 languages. 

The tools  include:   

  • Non-motor symptom questionnaire which is the only validated tool to measure these symptoms in Parkinson's Disease  
  • Non-motor symptom scale (NMSS) - used in 12 current international trials 
  • Parkinson's Disease Sleep Scale (PDSS-2) – most widely used Parkinson's Disease sleep scale in the world, used in over 20 trials  
  • King’s Parkinson’s Pain Scale - the only Parkinson's Disease -specific pain scale   

Scales used in international clinical trials

The Movement Disorders Society adopted the tools, and we led the development of the MDS-NMS scale with the Society for updated global adoption. The scales, approved by the US Food and Drug Administration (FDA)  and UK National Institute for Care and Health Excellence (NICE), are used in international clinical trials testing new drugs for PD, leading to regulatory approval for drugs such as Targinact (for severe pain) and Rotigotine (for night-time symptoms).

The NMSS is the main outcome in an ongoing long-term (10 years) global study with >1600 patients, which has had support from our Biomedical Research Centre.

The dataset has led to individualised treatment for PD as well as >100 publications describing specific subtypes of non-motor symptoms in Parkinson's disease  requiring bespoke management.

We will continue to use our measures to investigate the effects of drug and non-drug treatments for types of non-motor symptoms in Parkinson's disease such as  anxiety/depression, cognition, sleep and apathy, among others. We also plan to develop new innovative methods to monitor non-motor symptoms at home using digital approaches, including the Iprognosis app (EU Horizon 2020) and Parkinson’s Kinetigraph (UK registry NIHR adopted). 



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