To examine the frequency and severity of verbatim Patient Report of Problems (PROPs) that individuals with Parkinson’s Disease (PD) find most bothersome.

An understanding of the unfiltered patient experience in the form of their most common problems and by disease duration is critical for patient-focused drug development and care.

Overall, the three most common bothersome symptom-domains were postural instability (59%), tremor (49%), and cognition (39%). Comparing % of patients reporting their most bothersome problems by early/mid/late years since diagnosis groups, reports were: tremor 56/46/31, postural instability 54/60/72, and cognition 36/39/46. Other bothersome problems included mood, pain, fatigue, and sleep (each reported by ~30%). The severity of PROPs was higher among participants with longer disease duration, compared to participants with early disease. 

Among a large sample of PD patients who shared their symptoms online, both motor and non-motor bothersome problems were reported and varied in frequency by duration of PD. Reports of tremor as the most bothersome problem were highest for earlier patients, whereas reports of postural instability or cognition were highest for patients with longer time since diagnosis. These findings provide a cross-sectional natural history of most bothersome PD symptoms that will be explored with additional longitudinal data in order to improve clinical care and inform patient-focused drug development.

Study Supported by: The Michael J Fox Foundation for Parkinson's Disease Research (New York, NY) and Biogen (Cambridge, MA)