Abstract Details

Title What Bothers Parkinson Patients: Clinical Curation of their Verbatim Reports

Topic Movement Disorders

Presentation(s) P5 - Poster Session 5 (5:30 PM-6:30 PM)

Poster/Presentation
Number 10-024

Objective To curate the verbatim reports of >10,000 Parkinson disease (PD) patients who volunteered to answer the questions: (1) What bothers you the most about your PD? and (2) In what way does this problem bother you by affecting your daily functioning?

Background The Patient Reported Outcome of Problems (PROP) captures unfiltered verbatim replies of patients about their bothersome problems and functional consequences in contrast with traditional PROs obtained by clinicians that typically rely on categorical assessments.

Design/Methods We examined the keyboard-recorded verbatim PD-PROP reports from 10,376 PD patients (5650 men, 4726 women) on the MJFF FoxInsight.org research platform, between November 2017 and August 2018, using natural language processing (NLP). Three PD curators, experienced in care and research, examined 100 random verbatim samples from ten symptom labels of PD. The curators interrogated the verbatim datasets of problem and consequence and created subcategories of terms that they in turn judged independently.

Results The most common motor and non-motor symptoms were respectively Tremor/Postural Instability and Sleep/Fatigue. Symptom labels were sub-categorized into clinically relevant terms, such as for Sleep (insomnia, excessive daytime sleepiness, both, REM behavioral disorder, other) and Mood (depression, sadness, apathy, anxiety, irritability, frustration, other). A preliminary patient-reported, cross-sectional natural history of PD, using age/years since PD diagnosis and newly curated terms, will be presented with 3-dimensional bar charts.

Conclusions The verbatim PD-PROP reports, as captured on the FoxInsight.org internet platform, and the application of NLP and clinical curation techniques show utility in identifying the most bothersome problems that face PD patients. These data will be further informed as the cohort grows to 100,000 participants, 6-month longitudinal data accrue, and machine learning approaches are applied. Future use in clinical care and research will inform the broader utility of the PD-PROP to identify what is important to patients as a fit-for-purpose clinical outcome assessment

Authors/Disclosures
Lakshmi Arbatti, NLP (Grey Matter Technologies LLC) PRESENTER	Mrs. Arbatti has received personal compensation for serving as an employee of Grey Matter Technologies, LLC.
Connie C. Marras, MD (Toronto Western Hospital)	Dr. Marras has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Neurocrine Biosciences. The institution of Dr. Marras has received research support from Theravance Inc. The institution of Dr. Marras has received research support from Centogene.
Caroline M. Tanner, MD, PhD, FAAN (University of California San Francisco, Weill Institute for Neurosciences)	Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Evidera. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Neurocrine. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Jazz Pharmaceuticals/Cavion. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Bial . Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Supernus. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche Genentech. The institution of Dr. Tanner has received research support from Gateway LLC. The institution of Dr. Tanner has received research support from Roche\Genentech. The institution of Dr. Tanner has received research support from Michael J Fox Foundation . The institution of Dr. Tanner has received research support from National Institute of Health . The institution of Dr. Tanner has received research support from Department of Defense. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving as a Faculty, CME presentation with Medscape /WebND.
David G. Standaert, MD, PhD, FAAN (Univ of Alabama - Dept of Neurology)	Dr. Standaert has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Abbvie, Inc. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Curium. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alnylam. Dr. Standaert has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Biohaven. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Consultant for CVS/Pharmacy. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Consultant for HanAll Biopharma. Dr. Standaert has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Eli Lilly. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Consultant for F. Hoffman LaRoche. Dr. Standaert has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi-Aventis. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Theravance, Inc. Dr. Standaert has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for International Parkinson and Movement Disorder Society. The institution of Dr. Standaert has received research support from Abbvie, Inc. The institution of Dr. Standaert has received research support from American Parkinson Disease Association. The institution of Dr. Standaert has received research support from National Institutes of Health. The institution of Dr. Standaert has received research support from F. Hoffman LaRoche. Dr. Standaert has received publishing royalties from a publication relating to health care. Dr. Standaert has received personal compensation in the range of $500-$4,999 for serving as a Reviewer with National Institutes of Health. Dr. Standaert has a non-compensated relationship as a Chair, Scientific Advisory Board with American Parkinson Disease Association that is relevant to AAN interests or activities.
	No disclosure on file
Ira Shoulson, MD (University of Rochester)	Dr. Shoulson has received research support from Vaccinex.

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