Non-motor Parkinson’s symptoms can fluctuate with dopaminergic medication effectiveness. Anxiety, sadness, lack of energy and fatigue are common symptoms during the off-medication condition, whereas euphoria, impulse control disorders, hypomania, and psychosis might occur during the on-medication condition. These fluctuations may be disabling and deteriorate quality of life. Moreover, people with Parkinson’s can feel stigmatized and ashamed due to their symptoms. The availability of adequate rating scales for measuring neuropsychiatric fluctuations and shame in Parkinson’s would help clinicians and patients to recognize these symptoms and to address them.
We believe the Neuropsychiatric Fluctuations Scale (NFS) and the Shame in Parkinson’s disease (SPARK) Scale are adequate, acceptable, reliable and valid instruments to measure neuropsychiatric fluctuations and shame in Parkinson’s disease.
People with Parkinson’s will be recruited in clinics in several European countries and will complete a set of rating scales, including the NFS and the SPARK, to assess the presence and severity of motor and non-motor symptoms. The scales will be translated and adapted into the languages of the participant countries. Researchers will use several statistical techniques to analyze the data quality and the psychometric properties of the NFS and SPARK rating scales, in order to ensure they are adequate for Parkinson’s.
Impact on Diagnosis/Treatment of Parkinson’s Disease:
The NFS and the SPARK scales will allow patients and clinicians to recognize, identify and assess neuropsychiatric fluctuations and feelings of shame. This may allow prevention and treatment of neuropsychiatric fluctuations with drug adjustments. Patients with feelings of shame can be referred to psychological services or to support groups to learn how to cope with these feelings.
Next Steps for Development:
In the future, both scales can be translated and adapted to other languages and contexts. Sensitivity of NFS and SPARK to treatment effects and to underlying neurobiology of neuropsychiatric fluctuations and shame are further interesting developments.