Soileau Michael, Kumar Rajeev, Parab Ashwini, Brion Triza, White Kailee, Yan Connie H, Shah Megha B, Kukreja Pavnit, Facheris Maurizio F, Shewale Anand, Aldred Jason
Texas Movement Disorder Specialists, Georgetown, TX, 78628, USA.
Rocky Mountain Movement Disorders Center, Englewood, CO, USA.
J Neurol. 2025 May 22;272(6):416. doi: 10.1007/s00415-025-13123-y.
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).
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.
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.
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.
NCT04750226; started February 18, 2021.
我们旨在评估左旋多巴/卡比多巴(LDp/CDp)长期使用的易用性、便利性、自我效能感和满意度。LDp/CDp是一种通过外部便携式泵进行24小时持续皮下输注的疗法,用于管理帕金森病患者(PwP)的运动波动。
使用LDp/CDp≥6个月并参加开放标签研究的PwP参与了半结构化访谈,采用内容和主题分析法进行定性分析。
对19名成年人进行了访谈,他们的平均(标准差)年龄为63.6(10.8)岁,病程为9.2(3.4)年,LDp/CDp使用时间为15.4(3.4)个月。大多数人认为LDp/CDp使用方便(89.5%)且可靠(100%),并制定了将泵融入日常生活的策略。泵通常斜挎或系在腰间,对睡眠影响最小,不过参与者强调要注意输液管,防止缠绕。参与者通过使用提醒、闹钟或时间表来建立日常习惯,84.2%的人在≤20分钟内准备好泵。大多数人(81.3%)有信心独立使用LDp/CDp,92.3%的人对LDp/CDp满意,称症状控制得到改善且一致,使他们有更多自由参与日常和社交活动。参与者建议对泵进行改进,包括使其更小、更轻。
PwP对继续使用LDp/CDp表示高度满意和意愿。PwP及其护理伙伴制定了创新策略,将泵融入日常生活,且感知到的症状改善促使他们成功坚持使用这种耐受性良好的治疗方法。
NCT04750226;于2021年2月18日开始。