Optimization of community resources and systems of support to enhance the process of living with Parkinson's Disease

Parkinson's disease (PD) is a chronic, progressive neurodegenerative disease that affects between 100-150 people per 100,000. In the population over 60 years, the prevalence is about 1%. As the population grows older, the proportion of people with PD in Norway is expected to rise. There is currently no curative treatment for PD, and the direct and indirect consequences of the disease are significant. Some of the most common consequences of PD include decreased productivity, increased need for care, and changes in social roles. The complex and progressive characteristics of PD are well described. Non-motor symptoms and psychosocial needs pose a significant burden for both the patient and the family-carers, while these symptoms are the main cause of reduced quality of life. Strategies are needed to minimize the impact of the disease on the patient and family-carers, while maximizing quality of life through better utilization of available resources. Measures beyond the biomedical management of the disease are therefore needed to increase focus on the daily lives of people with PD and their family-carers. The overall purpose of this study is to establish the feasibility and acceptability of an intervention that will enhance the process of living with PD for patients and family-carers by building multisectoral care pathways. The project will have a particular focus on mapping out existing welfare policies, regimes, and clinical guidelines within healthcare systems of the participating countries and in relation to systems of support and integrated care for a multisectoral action. The goal is to develop an intervention that will optimize access to necessary resources and services in the community across what is offered by public and private sectors. The project has been organized into four work packages. Work Package 1 focused on user involvement in research and included the establishment of user involvement at all levels in all partner countries, as well as the evaluation of user involvement. The user groups were broadly composed, totaling 32 participants who were individuals with PD, caregivers of individuals with PD, healthcare personnel from the municipal sector, representatives from the voluntary sector (such as national Parkinson's associations), and healthcare professionals and other stakeholders from specialized health services and institutions involved in service production. Meetings were held regularly in all partner countries, and the evaluation of this work continues beyond the project period. Work Package 2 consisted of a systematic literature review to gain an overview of existing services for individuals with PD and their caregivers, offered by public and private entities in all partner countries. The first scientific article has already been published (Nielsen et al 2022), while the second article from this work is undergoing peer review. Work Package 3 involved investigating the roles and forms of collaboration that actors in the private and public sectors practice today. A total of 166 qualitative interviews were conducted with individuals with PS, caregivers of individuals with PS, healthcare personnel, and stakeholders at the system level. The results of this work have been published in three scientific articles; Soilemezi et al (2022) focus on how we can understand the various support systems from the perspective of healthcare professionals and stakeholders, Navarta-Sánchez et al (2022) focus on the perspectives of individuals with PS and their caregivers regarding disease management in the municipal sector, Hjelle et al (2023) provide a Scandinavian perspective on caregivers who are partners of individuals with PD. Together, these articles have described the landscape within which the intervention will be implemented. In Work Package 4, we utilized the knowledge developed in the previous work packages to create a cross-sector intervention for individuals with PD and their caregivers, as well as stakeholders in the service system at different levels and sectors. At the system level, we developed the framework for the role of a Parkinson's coordinator/contact person in the municipal sector, which included training coordinators/contact persons and developing tools for accessing available resources in the local community. At the individual level, the intervention involved access to a coordinator or contact person who supported individuals with PS and their caregivers over a three-month period. The intervention was tested in a feasibility study, where the feasibility and acceptance of the intervention were examined. A total of 130 individuals participated in the intervention trial. These participants received guidance and access to services tailored to their needs throughout various stages of the disease course. The scientific articles from Work Package 4 have not been published yet, but four articles are currently in progress beyond the project period.

All partners have established sound connections with local, regional and national Parkinson’s Disease Associations and federations for delivery of the project and dissemination of results. We have also worked with Parkinson’s Euro (https://www.parkinsonseurope.org/) for PPI support, visibility and dissemination of our work, reaching a wider public audience. The Norwegian and UK partners are now co supervising a funded PhD student from the University of Oslo. As we share common interest in the field of integrated care for Parkinson’s Disease with Prof Bas Bloem (Parkinson’s Net), we have been discussing some of our work and results with him, he also gave the closure Keynote of the Optim Park Closure Stakeholders event, and we will continue working with him to produce the paper on Multisectoral Care pathways with him as a co-author. Other connections with clinical trusts, primary care settings, municipals and community care resources were also established as part of the project delivery and evaluation. The Norwegian and Danish partners have initiated further development of the intervention and are currently working on new grant proposals to carry the work beyond the OPTIM-PARK. Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory. These five strategies have been published in our papers. In addition, our results have developed further understanding about the management of Parkinson's disease at the community level and the use of resources not only directly linked to the health system. Considering all the agents providing care and support to people with Parkinson’ disease and family carers facilitates the creation of strategies that better respond to individual needs. Health and social care professionals in the community and specialist levels of care should collaborate to develop multisectoral strategies that promote personalised and integrated care throughout the Parkinson's journey. We have tested an intervention that proves promise in the management of PD in the community not only for patients but also for family carers. Evaluation of this intervention at a larger scale is necessary to really determine the cost effectiveness and health economy value of this intervention. Further testing of our intervention and an thorough economic analysis of care pathways at a larger scale is needed. The long-term value of the Optim Park project could include higher reach and participation of people with PD and family carers in personalised care, this project has developed a promising line of work with positive results.

This project aims to evaluate the feasibility of an intervention that will enhance the process of living with PD for patients and family-carers by building multisectoral care pathways, with a special focus on how to optimize the use of resources and systems of support in the community in disadvantaged populations of different European countries. The implementation of care pathways to improve the process of living with PD for patients and families requires a multisectoral and interdisciplinary action plan and important mobilisation of community resources if sustainable and integrated health supporting environments are to be delineated. Interagency collaborations are paramount and highlighted in policies for long term conditions but do not currently get implemented and evaluated. A transformative framework that incorporates a change of culture and dialogue between sectors and levels of care is essential to build an overarching strategy at a European level, which ensures equity, continuity and transparency in health-social care policies. This is a mixed method feasibility study with a sequential exploratory design with 3 phases: Phase 1. Literature reviews and initial qualitative data collection about the availability, use and networking of community resources and systems of support. This will feed into the design of a user driven multisectoral intervention focused on the experience of living with PD for patients and family-carers and optimisation of lay and professional community resources across Europe. Phases 2 and 3. A feasibility study to test the intervention in different European contexts, and qualitative and quantitative process evaluation and interpretation of the findings to delineate European care pathways. The transnational cooperation will benefit different stakeholders including professionals, user organizations, and politicians, by learning from ‘good practice’ in a process of disseminating ideas, knowledge and experiences from one setting to another.