Objective: The overall purpose of this study is to develop, test and evaluate the results of a self-management program targeted PwP with the aim of empowering both PwP and caregivers.

Background: Living with Parkinson`s disease (PD) involves living with a variety of symptoms, each of which affects many aspects of everyday life and quality of life (QoL). To support People with PD (PwP) and their caregivers to develop skills and provide them with tools to adapt to life with PD, increase QoL, as well as promote self-management, there is a need for education in all aspects of the disease, including psycho-social aspects.

Method: 85 PD-patients (Hoehn&Yahr score 1-3) will be included in the study. Participants are recruited consecutively from MDC at two hospitals, private neurologists and at a specialized rehabilitation center.

Study 1: Exploratory, qualitative study. Data on how PD-patients describe the needs in everyday life, self-efficacy, coping strategies, and clinical perspectives, was obtained through workshops and focus-group interviews with PwP, caregivers, healthcare professionals and other stakeholders.

Study 2: Intervention study. Based on the results in Study 1, a 8-week self-management program were developed and consists of; 6 educational sessions, monitoring of motor and non-motor symptoms by the Parkinson KinetiGraph^TM (PKG At Home), individual goal-setting, home visits by PD-nurse and mindfulness-sessions. Primary oucomes are changes in scores of Health Education Impact Questionnaire (HeiQ) and Health Literacy Scale (HLS-14). Secondary outcome measures are changes in QoL-score (PDQ-39), The General Self-efficacy Scale (GSES), algorithm outcomes regarding motor symptoms and fluctuation score measured by the PKG, and numbers of contacts to the clinics (pre-baseline and at follow-up).

Study 3: Follow-up study 3 and 6 Months after the intervention.

Results: Study 1 was completed in September 2022. From October 2022 to March 2023 the first two groups of PwP and their caregivers completed the self-management program (27 PwP and 23 caregivers).

Conclusion: In Study 1 a self-management program  tailored PwP and their caregivers was developed with Patient&Public involvement and is currently being tested. The data will be analyzed when all 85 PwP have completed the self-management program.

The study will also be presented at the World Parkinson Congress July 2023

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MDS Abstracts - https://www.mdsabstracts.org/abstract/empowerment-of-people-with-parkinsons-disease-development-testing-and-evaluation-of-a-cross-sectoral-intervention-based-self-management-program/