Lived Experiences Within the First Year of a Parkinson's Disease Diagnosis: The Patient Voice Using Verbatim-reported Symptoms
Surabhi Garg1, Joshua Keses2, Glenn Stebbins3, Tiago Mestre4
1The Ottawa Hospital, University of Ottawa, 2Western University, 3Rush University Medical Center, 4University of Ottawa Brain and Mind Research Institute
Objective:

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

Background:

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.

Design/Methods:

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.

Results:

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.

Conclusions:

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.

10.1212/WNL.0000000000210989
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.