COMPLETE: Optimization of community resources and systems of support to enhance the process of living with Parkinson’s Disease: a multisectoral intervention (Linked to PARTNERS)

Chief Investigator:  Professor Mari Carmen Portillo – University of Southampton

Funder :

The Optim Park, April 2019-December 2022, aimed 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, 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 Optim Park consortium was composed of 4 countries (Denmark, Norway, Spain and UK (coordinators)). running according to plans considering we are reporting a period of 9 months (the project starting in April 2019). The consortium has worked efficiently and important professional and personal links have been established across partners. 

A total of 6 WPs were completed:

1. Patient and public involvement

2. Evidence on systems of support and integrated care for people with PD

3. Roles and working relationships between agencies and levels of care

4. Feasibility trial

5. Dissemination and 6. Management.

The research design of the Optim Park project included reviews of evidence and statutory documents, qualitative research (166 interviews with people with PD, carers, stakeholders and professionals), and quantitative research (feasibility trial of a designed intervention with 220 participants including people with PD and family carers).

Our findings led to the design of an intervention that consisted of introducing the PD coordinator role and personalised assessment of needs, prioritisation of needs and referral to community resources with follow up. We have developed a very strong and sustainable PPI plan for this project, and we have liaised with key national and international voluntary organisations for PD and clinical sites, which were essential for the delivery and implementation plans of our work.

Dissemination of the project took place through scientific and lay routes. Additional funding has been secured throughout the life of the Optim Park project for next research steps, the PD Coordinator role in the UK, exchange opportunities for PhD candidates and the development of young researchers and postdoctoral mobility. 

These are our published papers

1. Portillo, M.C., Anita Haahr, Navarta-Sánchez, M.V. (2021). Management, levels of support, quality of life, and social inclusion in Parkinson’s disease: interventions, innovation, and practice development, Parkinson's Disease, DOI: 10 1155/2021/4681251.

2. Portillo, M. C., Haahr, A., & Navarta-Sánchez, M. V. (2021). Management, levels of support, quality of life, and social inclusion in Parkinson’s disease: interventions, innovation, and practice development. Parkinson´s Disease,  https://doi.org/10.1155/2021/4681251.

3. Soilemezi, D., Palmar-Santos, A., Navarta-Sánchez, M.V., Roberts, H., Pedraz-Marcos, A., Haahr, A., Sørensen, D., Bragstad, L., Hjelle, E., Bjørnsen Haavaag, S., Portillo, M.C. (2022), Understanding support systems for Parkinson's disease management in community settings: A cross-national qualitative study. HealthExpectations, https://doi.org/10.1111/hex.13691.

4. Soilemezi, D., Roberts, H., Navarta-Sánchez, M.V. Kunkel, K., Ewings,S., Reidy, C., Portillo, M.C. (2022). Managing Parkinson’s during the COVID-19 pandemic: perspectives from people living with Parkinson’s and health professionals. Journal of Clinical Nursing, DOI: 10.1111/jocn.16367.

5. *Nielsen, T., Kruse, N., Haahr, A., Hjelle, E.G., Bragstad, L.K., Palmar-Santos, A., Navarta-Sánchez, M.V., Pedraz-Marcos, A., Bartolomeu Pires, S., Roberts, H., Portillo, M.C. (2022). Exploring health and social services in Denmark, Norway, Spain and the United Kingdom for the development of Parkinson's care pathways. A document analysis. Health and Social Care in the Community, doi:10.1111/hsc.13970.

6. Vester, L.B., Haahr, A., Nielsen, T.L., Bartolomeu, S., Portillo, M.C. (2023), A Parkinson care-coordinator may make a difference: A scoping review on multi-sectoral integrated care initiatives for people living with Parkinson's disease and their caregivers. Patient Education and Counselling, doi: 10.1016/j.pec.2023.107931.

7. Hjele, E.G., Rønn-Smidt, H., Haahr, A., Haavaag, S., Sørensen, D., Navarta-Sánchez, V. Portillo, M.C., Bragstad, L.K. (2024). Filling the gap in service provision Partners as family carers to persons with Parkinson’s disease: A Scandinavian perspective. Chronic Illness, DOI:10.1177/17423953231174470.

8. Navarta-Sánchez, M.V., Palmar-Santos, A., Pedraz-Marcos, A., Reidy, R., Soilemezi, D., Haahr, A., Sørensen, D., Rønn Smidt, H., Kildal Bragstad, L., Gabrielsen Hjelle, E., Bjørnsen Haavaag, S., Portillo, M.C. (2023). Perspectives of people with Parkinson's disease and family carers about disease management in community settings: a cross-country qualitative study. Journal of Clinical Nursing, https://doi.org/10.1111/jocn.16636.

9. Pedraz-Marcos A, Palmar-Santos AM, Portillo MC, Navarta-Sánchez MV. Management of Parkinson's in the Community: Interests and Expectations of People Living with Parkinson's, Family Carers, Healthcare Professionals and Stakeholders in Spain. Glob Qual Nurs Res. 2025 Nov 3;12:23333936251384434.

Who did we work with?

Coordinator/chief investigator of the project: United Kingdom: University of Southampton, Professor Mari Carmen Portillo

Country leads:

• Spain: Autonomous University Madrid, Dr Victoria Navarta Sanchez Spain, Fundación La Princesa, Dr Lydia López

• Denmark: VIA University College,  Dr Anita Haahr

• Norway: University of Oslo, Dr Line Kildal
  

Partners: Parkinson’s disease associations in the four countries