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EMPOWER-PD: Evaluation of an 8-Week Co-Designed Self-Management Program in People With Parkinson's Disease and Their
Trine Hørmann Thomsen1,2, Sara Lungby Skovbølling3, Maria Brønden4
1Movement Disorder and Pain Research Center, Department of Neurology, Copenhagen University Hospital, Copenhagen, Denmark, gentoftehospital.dk.
Abstract:
Empowerment and implementation of self-management strategies are vital components in the future care of chronic, neurological patient groups, including people with Parkinson's disease (PD). This study aimed to evaluate the feasibility and effectiveness of an 8-week self-management intervention designed for people with PD (PwP) with follow-up assessments at 3 and 6 months postintervention. The program focused on developing self-management skills, coping strategies, disease education, mindfulness, exercise routines, and individual goal-setting tools. Objective measurements using Parkinson's KinetiGraph™ (PKG) were employed to monitor motor symptoms, immobility levels, and burden of nonmotor symptoms (self-reported in the PKG portal). Participants, serving as their own controls, were recruited from movement disorder clinics, private neurologists, and a specialized rehabilitation center. Primary endpoints were change in Health Education Impact Questionnaire (HeiQ) and Health Literacy Questionnaire (HLQ-14) scores, assessed at baseline and at 3- and 6-month follow-up. Secondary endpoints included changes in quality of life, self-efficacy, motor symptoms (PKG data), nonmotor symptoms, contacts to the clinics 6 months before and after the intervention, and time spent with immobility. Eighty PwP completed the program, and 59 caregivers attended the educational sessions. Statistically significant changes were found between baseline and follow-up in the motor symptom burden, self-efficacy, and reduced clinical contacts. Although no statistical changes were observed in health literacy, quality of life, and nonmotor symptoms, sustained positive trends were observed. The findings suggest that the program may enhance empowerment and self-management strategies in PwP, particularly in self-efficacy level, managing motor symptoms, and less need of contact to the clinics.
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