Why carry out the study?

The clinical outcome assessments used in clinical trials investigating early-stage Parkinson’s disease do not fully capture the subtle concepts meaningful to people with this disease.

Through interviews with people with early-stage Parkinson’s disease and their relatives, we aimed to conceptualize the patient experience and identify patient-recognized cardinal symptoms/impacts that may be more useful in clinical trials.

What was learned from the study?

The concepts identified as cardinal in early-stage Parkinson’s disease were bradykinesia/slowness (notably in the form of “functional slowness”), tremor, rigidity/stiffness, effects on mobility (particularly fine motor/dexterity and subtle gait abnormalities), fatigue, depression, sleep/dreams, and pain.

A new patient-reported outcome instrument, developed with patients, is needed to accurately reflect the lived-experience of early-stage Parkinson’s disease.