Objective: This study aims to test a 8-week self-management program, developed collaboratively with People with PD (PwP), caregivers, healthcare professionals and other stakeholders using a co-creation framework in a pre-liminary study.

Background: Parkinson’s disease (PD) poses significant challenges for individuals affected by it, necessitating effective self-management strategies, knowledge and empowerment to mitigate its consequences and effectively manage the disease. To meet evolving challenges, the Empower-PD program is specifically designed to address these challenges, and pave the way for a more comprehensive approach to PD care.

Method: Through this intervention study with follow-up measurements, the participants completed the 8-week self-management program. Key components consisted of 5 educational sessions (focus on motor symptoms, non-motor symptoms, physical activities/exercise,and psycho-social factors), personalized goal-setting (‘PD GOAL’), mindfulness components and objective symptom monitoring during all 8 weeks. It was hypothesized that implementation of the co-created self-management program would lead to significant improvements in various aspects of well-being and empowerment among PwP. Primary endpoints included impact of the health education (HeiQ), and Health Literacy (HL-14). Secondary endpoints included differences in scores in Quality of Life (PDQ-39), Self-efficacy (GSES), scores of sedentary behavior, motor symptom scores (continuous data from wearable measurements), differences in levodopa equivalent dose (LED) utilization and number of contacts to the clinic. Data were collected at baseline, after completing the program, and 3 and 6 months at follow-up.

Results: 84 individuals with Parkinson’s disease (PwP) and 59 caregivers were enrolled. Eighty-one PwP completed the program. Descriptive analysis will be conducted on demographic and clinical data, and differences in scores from baseline to the 6-month follow-up will be analyzed using statistical methods. Results will be showcased and presented at the MDS Congress in September 2024 in Philadelphia, USA.

Conclusion: The co-created self-management program represents a novel approach to empower individuals with PD in managing their condition. Further evaluation of the endpoints will provide a comprehensive understanding of the program’s impact.

Figure 1: Self-management program

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MDS Abstracts - https://www.mdsabstracts.org/abstract/empower-pd-testing-and-evaluation-of-an-8-week-co-created-self-management-program-tailored-people-with-parkinsons-disease-and-their-caregivers-in-an-interventional-follow-up-study/