RESUMO
Background: Testing and titration of the right levodopa equivalent dose are usually performed during a hospital admission. However, optimal dose titration in people with Parkinson's disease (PwPs) may depend on home environment, emotional stress, and physical activity of everyday life. Objective: Firstly, to evaluate the feasibility and safety of a home-based LCIG titration program and patients'/caregivers' satisfaction. Secondly, to identify barriers and facilitators for home-based titration. Method: This study assesses the feasibility and safety of home-based titration of levodopa duodenal infusions with the use of self-reported evaluation questionnaires with open-ended questions included, registration of total time used, and number of contacts/visits. A telemedicine solution was used to remotely monitor the patients, adjust treatment, and provide support and guidance to patients and caregivers. Results: Ten of 12 PwPs (5 females and 7 males) completed the total titration program. Eight of the 12 PwPs were dependent on help. These 8 PwPs also had a high burden of nonmotor symptoms (NMS). Cognitive impairments varied in severity (range 16-30). Time spent with home visits was on average 93.4 minutes (ranging from 35 to 180 minutes), and the length of the total titration (LCIG initiation to termination of titration) was on average 3.4 days with 2-5 (mean 3.2) contacts/visits with PD team members. The average score on the satisfaction evaluation questionnaires was lower in the caregiver group (mean 31.8) than the PwP outcome (mean 36.2). Conclusions: Telehealth-assisted home-based titration programs are feasible due to the length of the titration period, number of contacts, and time spent in PwPs' private homes, are rated satisfactory and safe by PwPs and caregivers, and may be a substitute for in-hospital treatment. Clinical recommendations including facilitators and barriers from a patient/caregiver perspective are displayed. This trial is registered with NCT4196647.
RESUMO
BACKGROUND: Within Parkinson's disease (PD) management, a pivotal juncture often arises when individuals with PD (PwP) necessitate advanced therapies to stabilise symptom fluctuations and reduce off-periods, which are intrinsic to living with PD. One such intervention is the infusion of duodenal levodopa-entacapone-carbidopa intestinal gel (LECIG), which confers a more dependable levodopa plasma concentration compared with conventional oral therapy. It involves the insertion of a percutaneous endoscopic gastrojejunostomy (PEG-J) tube, facilitating direct access to the stomach and jejunum. Then, a slender tube extends into the small intestine, facilitating the continuous delivery of LECIG via a portable pump. The PEG-J incorporates an extension tube that permits patients with PD to connect the medication pump. OBJECTIVE: The objective of this study was to assess and compare two types of extension tubes a standard; a standard tube and the ENFit extension tube. METHOD: Employing a prospective, crossover design at a single centre in Denmark. Each participant evaluated both extension tubes for 14 days. The primary outcome measure was patient-reported evaluation measures through a nine-item questionnaire using a 5-point Likert scale and 10th open-ended qualitative question. RESULTS: Of the 12 recruited PwP, 10 successfully completed both testing periods and submitted self-reported questionnaires. The participants, with an average age of 70.3 years, comprised three men and seven women. Among them, five had a spouse or cohabitant, while five lived independently (with one residing in a nursing home). The average duration of PD diagnosis was 16.4 years, with an average of 2.6 years since the implantation of the medication pump. The ENFit tube outperformed the standard tube across all nine evaluation criteria, particularly excelling in terms of usability (items 4-6), safety (item 2) and overall product preference (item 9).