Patient-Reported Symptom Burden in Individuals With Parkinson Disease

BACKGROUND AND OBJECTIVES: To better understand Parkinson disease (PD) burden and advance the clinical management of patients, it is important to ascertain the most significant symptoms directly from individuals with PD. This research used patient-reported data to identify the most prevalent and impactful symptoms experienced by individuals with PD and determine the demographic and clinical characteristics that are associated with higher symptomatic burden. METHODS: We conducted semistructured qualitative interviews of 20 individuals with self-reported PD, obtaining 2,978 quotes regarding potential symptoms of importance. Findings from these interviews informed the development of a cross-sectional survey study designed to asess the impact of these symptoms in a larger cohort. Four-hundred four participants with self-reported PD participated in the survey study, providing the prevalence and relative importance (0-4 scale) of 301 symptoms representing 14 symptomatic themes. We subsequently performed subgroup analysis to identify demographic and clinical characteristics that were associated with a higher prevalence of symptomatic burden in PD. RESULTS: The most prevalent symptomatic themes identified by participants were sleep disturbances and daytime sleepiness (87.0%) and fatigue (84.7%). The symptomatic themes with the greatest impact (0-4) on participants' lives were fatigue (1.34) and sleep disturbances and daytime sleepiness (1.29). A higher prevalence of disease burden across all symptomatic themes was most strongly associated with speech impairment, gait freezing, and a duration of tremor greater than 5 years. DISCUSSION: The impact of PD on the lives of those living with this disease is multisystemic, reaching beyond the cardinal motor symptoms. Fatigue, sleep disturbances, and daytime sleepiness are highly prevalent and important to this population.