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Abstract Details

Perspectives on Parkinson's Disease Medications: A Qualitative Study of People with Parkinson's Disease
Movement Disorders
P14 - Poster Session 14 (11:45 AM-12:45 PM)
5-015
Few studies investigate the factors that inform the impact of PD medications on individuals’ lives. This qualitative study aims to better understand PwPD’s experiences with and perspectives on their medications.
To explore the thoughts, beliefs, and expectations of people with Parkinson’s disease (PwPD) regarding their Parkinson’s disease (PD) medications.
PwPD treated with PD medications at five movement disorder clinics in five states across the United States were recruited to participate in semi-structured interviews (SSIs) and focus groups (FGs). Interview and moderator guides developed to explore participants’ experiences with PD medication were utilized. Inclusion criteria consisted of confirmed PD diagnosis, history of taking medications for PD, aged ≥18 years, and ability to consent and participate. SSI and FG transcripts were analyzed via grounded theory methodology to identify primary themes and subthemes.
Twenty PwPD (8 females/12 males; aged 48-80 years) participated in one-hour telephone SSIs and 32 (16 females/16 males; aged 57-86 years) participated in one-hour online FGs. Four primary themes (subthemes in parentheses) emerged regarding medications for PD: (1) effectiveness (effectiveness uncertainty, expectation realignment), (2) side effects (tolerating side effects, discerning side effects vs disease progression), (3) timing challenges (dosage timing, off-times), and (4) desires (more options, therapy advancement). Participants were uncertain whether they were experiencing the full benefits of their medications and unsure of whether their symptoms were medication side effects or signs of disease progression. High dosing frequency is especially taxing on PwPD, and participants expressed a desire for longer-lasting medications and more therapeutic options.

 

This study identified four core dimensions of PD medications from the perspective of PwPD. Results indicate the need for enhanced communication between providers and patients regarding PD medication to reduce uncertainties around symptom burden, and continued efforts to develop and advance PD treatments.
Authors/Disclosures
Steve Arcona, PhD (Cerevel)
PRESENTER
Dr. Arcona has received personal compensation for serving as an employee of Cerevel. Dr. Arcona has stock in Cerevel.
Kristin Richards, PhD (University of Texas At Austin ) Dr. Richards has received research support from Cerevel Therapeutics.
Carolyn Brown, PhD Dr. Brown has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Taiho. Dr. Brown has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Patient Centered Outcomes Research Institute (PCORI). The institution of Dr. Brown has received research support from National Comprehensive Cancer Network/Pfizer. The institution of Dr. Brown has received research support from American Society of Clinical Oncology/Pfizer. The institution of Dr. Brown has received research support from Cerevel Therapeutics .
Michael Johnsrud, PhD Dr. Johnsrud has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Atlas Clarity. Dr. Johnsrud has stock in NuCara Management Group. The institution of Dr. Johnsrud has received research support from Cerevel Therapeutics.
Rahul Sasane, PhD (Cerevel Therapeutics) Dr. Sasane has received personal compensation for serving as an employee of Cerevel Therapeutics. Dr. Sasane has stock in Cerevel Therapeutics.
Melissa Armstrong, MD, MSc, FAAN (UF Department of Neurology) The institution of Dr. Armstrong has received research support from National Institute of Aging. The institution of Dr. Armstrong has received research support from Florida Department of Health. The institution of Dr. Armstrong has received research support from Lewy Body Dementia Association. Dr. Armstrong has received research support from Parkinson Foundation. Dr. Armstrong has received personal compensation in the range of $5,000-$9,999 for serving as a DSMB member with Alzheimer's Clinical Trials Consortium. Dr. Armstrong has received personal compensation in the range of $5,000-$9,999 for serving as a DSMB member with Alzheimer's Disease Cooperative Study. Dr. Armstrong has a non-compensated relationship as a Member, Scientific Advisory Council with Lewy Body Dementia Association that is relevant to AAN interests or activities.
Jeanne Feuerstein, MD (University of Colorado School of Medicine) The institution of Dr. Feuerstein has received research support from Mowry Fund Grant. The institution of Dr. Feuerstein has received research support from Davis Phinney. Dr. Feuerstein has received personal compensation in the range of $500-$4,999 for serving as a Parkinson's Expert for Legal Case with Keating Wagner Palidori. Dr. Feuerstein has received personal compensation in the range of $100,000-$499,999 for serving as a Attending Neurologist with VAMC. Dr. Feuerstein has received personal compensation in the range of $100,000-$499,999 for serving as a Assistant Professor of Neurology with University of Colorado.
Holly A. Shill, MD, FAAN (Barrow Neurology Clinics) Dr. Shill has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Sage Biogen. Dr. Shill has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Abbvie. Dr. Shill has received personal compensation in the range of $500-$4,999 for serving as a Consultant for KeifeRx. Dr. Shill has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Praxis Precision Medicine. Dr. Shill has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Fasikl Inc.
Lauren S. Talman, MD Dr. Talman has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Oregon Federal Public Defenders Office. Dr. Talman has received personal compensation in the range of $500-$4,999 for serving as a panelist with HDSA.
Sneha Mantri, MD Dr. Mantri has received personal compensation in the range of $0-$499 for serving as a Consultant for Deep Brain Innovations, LLC. Dr. Mantri has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Grey Matter Technology. The institution of Dr. Mantri has received research support from The Michael J Fox Foundation for Parkinson Research.