Perspectives on Parkinson's Disease Medications: A Qualitative Study of People with Parkinson's Disease
Kristin Richards1, Carolyn Brown1, Michael Johnsrud1, Steve Arcona2, Rahul Sasane2, Melissa Armstrong3, Jeanne Feuerstein4, Holly Shill5, Lauren Talman6, Sneha Mantri7
1University of Texas at Austin - Austin, TX, 2Cerevel Therapeutics, 3UF Department of Neurology, 4University of Colorado Denver School of Medicine, 5Dignity Health, 6Oregon Health & Science University, 7Duke University
Objective:
To explore the thoughts, beliefs, and expectations of people with Parkinson’s disease (PwPD) regarding their Parkinson’s disease (PD) medications.
Background:
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.
Design/Methods:
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.
Results:
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.
Conclusions:
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.