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Abstract Details

Lived Experiences Within the First Year of a Parkinson's Disease Diagnosis: The Patient Voice Using Verbatim-reported Symptoms
Movement Disorders
P11 - Poster Session 11 (8:00 AM-9:00 AM)
5-031

To evaluate the most bothersome symptoms reported by patients recently diagnosed with PD using the Parkinson’s Disease Patient Report of Problems (PD-PROP)

People recently diagnosed with PD have a wide range of clinical presentation and patient experiences might not align with clinical assessments. Prioritizing patient reported assessments of symptoms can help provide more personalized treatments and guide research to focus on possible unmet needs.

We analyzed data from the PD-PROP dataset developed by the Michael J. Fox Foundation for Parkinson's Research and included those data from subjects self-reported as having a clinical diagnosis of PD for 1 year or less. In PD-PROP, participants reported in their own words five most bothersome problems, rating the severity of each using a Likert-type scale. Data is analyzed by natural language processing and machine learning techniques curated by a team of clinical researchers and patient experts to classify the responses into clinical domains and subdomains. Descriptive data analysis was done.

We included a total of 5,732 participants. The most commonly reported bothersome symptom was tremor (n=2,405, 41.9%), followed by motor dexterity issues (n=1,781, 31.1%), psychiatric issues (n=1,229, 21.4%), gait disturbances (n=1,211, 21.1%), pain (n=1,100, 19.2%), cognitive symptoms (n=971, 16.9%), postural instability (n=924, 16.1%), fatigue (n=688, 12.0%), and bradykinesia (n=662, 11.6%). The available data at one year of follow-up (n=585) suggests that these domains were consistently reported as the most bothersome.

Patient-reported data from a large sample can offer key insights into the symptoms impact on patients' lives and guide the development of novel outcomes to more comprehensively capture the benefit of interventions in early PD.

Authors/Disclosures
Surabhi A. Garg, MD (St Johns Medical College and Hospital)
PRESENTER
Dr. Garg has nothing to disclose.
Joshua Keses, Student Mr. Keses has nothing to disclose.
Glenn T. Stebbins, PhD (Rush University Medical Center) Dr. Stebbins has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Biogen. Dr. Stebbins has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Partners Healthcare System. Dr. Stebbins has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for CHDI. The institution of Dr. Stebbins has received research support from Department of Defense. Dr. Stebbins has received research support from Cleveland Clinic Health Systems. Dr. Stebbins has received personal compensation in the range of $500-$4,999 for serving as a Course Director with MDS.
Tiago Mestre, MD, MSC (University of Ottawa) Dr. Mestre has received personal compensation in the range of $500-$4,999 for serving as a Consultant for CHDI. Dr. Mestre has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for PTC. Dr. Mestre has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Abbvie. Dr. Mestre has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Ipsen. Dr. Mestre has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Abbvie. Dr. Mestre has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. Dr. Mestre has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Abbvie. The institution of Dr. Mestre has received research support from CIHR. The institution of Dr. Mestre has received research support from Ontario Research Fund. The institution of Dr. Mestre has received research support from MJFF. The institution of Dr. Mestre has received research support from Parkinson Canada. The institution of Dr. Mestre has received research support from University of Ottawa/PRC.