Objective: To assess the most common, burdensome and worrisome symptoms experienced by people living with early Parkinson’s Disease (ePD).

Background: Research on symptom frequency and burden has historically been focused on patients in the later phase of Parkinson’s.

Method: A survey with multiple choice questions was completed by 150 ePD patients, diagnosed with PD for 0-5 years, in the US and Germany. The survey asked patients to select 1) the symptoms they currently or previously experienced, 2) the three most burdensome symptom domains, and 3) the three most worrisome future symptom domains. Symptom domains included in the survey were: bradykinesia, rigidity, mobility, tremor, sleepiness, fatigue, depression, pain, cognitive function issues, memory loss, gastrointestinal issues, urinary problems, sleep disorder and sexual dysfunction.Descriptive analyses were conducted for patients, who had been diagnosed for 0-3 years and 4-5 year

Results: From a total of 150 survey participants, 106 participants had been diagnosed for 0-3 years (mean age 63,3 [SD 3.45] years), and 44 participants had been diagnosed for 4-5 years (mean age 68.72 [SD 1.84] years). Patients diagnosed with PD for 0-3 years reported tremor (99%), fatigue (82%) and pain (73%) as the most common symptoms, and considered tremor (89%), pain (54%) and mobility issues (30%) as the most burdensome. Patients diagnosed with PD for 4-5 years reported tremor (100%), fatigue / bradykinesia (both 84%) and pain (82%) as the most common symptom domains, and rated tremor (77%), pain (64%) and mobility issues (39%) as the most burdensome symptom domains. Most worrisome symptoms in this group were tremor (70%), memory loss (59%) and pain (57%). This group reported considerably higher symptom burden with the following domains increasing in frequency more than 30% in comparison to patients diagnosed with PD for 0-3 years: memory loss (+44%), bradykinesia (+41%), urinary problems (+40%), cognitive function issues (+32%), gastrointestinal issues (+31%) (Fig 1).

Conclusion: Tremor, pain and mobility issues are perceived as the three most burdensome symptom domains, supplemented by memory loss as a most worrisome symptom domain. Several symptom domains which impact quality of life increase in frequency considerably over the first 5 years after diagnosis. These symptom domains should be evaluated in interventional clinical trials of early PD.

Figure 1: Frequency of symptom domains

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MDS Abstracts - https://www.mdsabstracts.org/abstract/perspective-of-people-living-with-early-parkinsons-disease-most-common-burdensome-and-worrisome-symptoms/