Objective: To survey Parkinson’s disease (PD) patients and providers about their experiences using Rytary, an oral extended release carbidopa/levodopa capsule (ER C/L).

Background: ER C/L demonstrated in clinical trials to decrease OFF time and improve ON time without increasing troublesome dyskinesia when compared to other levodopa formulations (Dhall & Kreitzman 2016). However, individual provider and patient experiences vary, and barriers to using ER C/L exist.

Methods: 801 PD patients and 250 physicians, nurse practitioners, and physician assistants completed separate online nationwide surveys to determine utility, side effects, satisfaction and barriers to using ER C/L.

Results: Movement disorders specialists were 27% of provider respondents; 44% were general neurologists. The top reasons providers chose ER C/L include reducing OFF time (69%) and reducing medication dosing frequency (32%). Reduction in OFF time was reported by 74% of providers but by only 50% of patients. Among providers, 71% reported reduction in dyskinesia, whereas only 27% of patients experiencing dyskinesia reported a decrease and 32% reported worsening dyskinesia. Dry mouth (33%) and fatigue (25%) were the most common side effects reported by patients. The proportion of patients reporting improvements in quality of life, motor symptoms, and non-motor symptoms with ER C/L were 51%, 55%, and 38% respectively. Patient perceived quality of counseling prior to initiation of ER C/L correlated positively with satisfaction (p <0.001). Providers cited high cost (38%), need for prior authorization (30%), and complicated dosing and conversion processes (12%) as most common barriers. Patients reported high cost (52%), inconvenient dosing (37%) and suboptimal symptom control (32%) as challenges. Twenty-six percent of patients discontinued ER C/L; the most common reasons were side effects (40%) and suboptimal symptom control (21%).

Conclusions: These large surveys evaluated patient and provider experiences with ER C/L. Both noted reduction in OFF time as a benefit. Patients reported moderate satisfaction with motor benefits and quality of life, but less satisfaction with the effect on non-motor symptoms. Providers noted a reduction in dyskinesia greater than what patients reported. High out-of-pocket costs and complicated conversion and dosing regimens were common barriers. There is continued need for accessible symptomatic therapies for PD to serve unmet patient needs.

References: Dhall, R., & Kreitzman, D. L. (2016). Advances in levodopa therapy for Parkinson disease Review of RYTARY (carbidopa and levodopa) clinical efficacy and safety. Neurology, 86(14 Supplement 1), S13-S24.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-and-provider-experiences-and-attitudes-toward-rytary/