Abstract
OBJECTIVE: To explore disease burden in Parkinson disease (PD) by evaluating the prevalence of symptoms and key disease milestones (critical events, e.g., hospitalization or frequent falls) and their association with quality of life (QOL) in those with PD. METHODS: We created and pretested an online needs assessment survey to evaluate the clinical characteristics, QOL, symptom prevalence, and critical event frequency among those with PD. We recruited individuals with self-reported Hoehn and Yahr stage II-V PD through online postings and email through the Davis Phinney Foundation. We used logistic regression to evaluate the association between a large number of uncontrolled symptoms and events on QOL. RESULTS: A total of 612 individuals (mean age 70.1 years, 49.8% women) completed the survey. Among respondents, 13.6% reported poor QOL. Nearly 20% of respondents reported >3 falls, and 15% of respondents had been hospitalized over the previous 6 months. Participants had an average of 5.1 uncontrolled symptoms, with 86.1% of respondents reporting at least 1 uncontrolled symptom; more than 10% of respondents reported >10 uncontrolled symptoms. Depression, confusion, pain, and bothersome hallucinations were associated with poor QOL among the cohort. CONCLUSIONS: In this national survey of individuals with PD, we identified poor QOL, frequent critical events, and numerous uncontrolled symptoms among a substantial proportion of respondents. Although motor symptoms were common, only nonmotor symptoms were associated with poor QOL. Many of these symptoms and events are treatable or preventable, highlighting the need for better identification and management to improve QOL among those with PD.