Patients' experience with and perspectives on long-term use of continuous subcutaneous infusion of foslevodopa/foscarbidopa in Parkinson's disease.

Objectives: We aimed to assess ease of use, convenience, self-efficacy, and satisfaction with long-term use of foslevodopa/foscarbidopa (LDp/CDp), a 24-h continuous subcutaneous infusion therapy delivered via an external portable pump for managing motor fluctuations in people with Parkinson's disease (PwP).

Methods: PwP using LDp/CDp for ≥ 6 months and enrolled in an open-label study participated in semi-structured interviews, which were qualitatively analyzed using a content and thematic approach.

Results: Nineteen adults, with an average (standard deviation) age of 63.6 (10.8) years, disease duration of 9.2 (3.4) years, and duration of LDp/CDp use of 15.4 (3.4) months, were interviewed. Most found LDp/CDp to be user-friendly (89.5%) and reliable (100%), and developed strategies to integrate the pump into their daily lives. The pump was commonly worn crossbody or around the waist, with minimal impact on sleep, though participants emphasized being mindful of the infusion set tubing to prevent tangling. Participants established routines using reminders, alarms, or schedules, and 84.2% prepared the pump in ≤ 20 min. Most (81.3%) were confident using LDp/CDp independently and 92.3% were satisfied with LDp/CDp, citing improved, consistent symptom control that allowed more freedom to participate in daily and social activities. Participants suggested improvements for the pump, including making it smaller and lighter.

Conclusion: PwP expressed high satisfaction and willingness to continue using LDp/CDp. PwP and their care partners developed innovative strategies to integrate the pump into daily routines, and the perceived symptom improvement drove successful persistence on this well-tolerated treatment.

Trial registration: NCT04750226; started February 18, 2021.