Most common, burdensome, and worrisome symptoms experienced by people living with early Parkinson's disease in Germany and the United States-Results from a cross-sectional survey.

BACKGROUND

The majority of research on the patient experience of Parkinson's disease (PD) has focused on the frequency and burden of late-stage symptoms, with less emphasis on understanding symptoms in the earlier phases of the condition.

OBJECTIVE

This descriptive, cross-sectional study aimed to identify the most common, burdensome, and worrisome symptoms of early-stage PD (ePD).

METHODS

An online, self-administered survey was completed by people with ePD (within 5 years of diagnosis) living in the United States and Germany. Descriptive statistics were used to report respondents' characteristics and responses to the survey questions.

RESULTS

Out of a total of 150 survey participants, 106 were diagnosed with ePD for 0-3 years, while 44 participants were diagnosed for 4-5 years. All respondents reported experiencing tremor, which, together with mobility issues and pain, were most frequently reported as the most burdensome symptoms in both groups. Bradykinesia, mobility issues, memory loss/time lapse, cognitive impairment, and urinary and gastrointestinal problems were reported with a frequency of at least 30% higher in the 4-5-year group.

CONCLUSION

In the surveyed population, the reported frequency of symptoms such as tremor, mobility issues, and pain was higher among those who were 4-5 years post-diagnosis, and these symptoms were reported as the most burdensome. The frequency and impact of motor and non-motor symptoms should be evaluated in future interventional clinical trials involving people living with ePD.