Article
Can Parkinson nurses help to improve care delivery for person’s with Parkinson’s disease?
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Authors
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Marlena van Munster
- Department of Neurology, Philipps University Marburg, Marburg, Germany
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Johanne Stümpel
- University of Cologne, Cologne Centre for Ethics, Rights, Economics, and Social Sciences of Health, Cologne, Germany
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Franziska Thieken
- Department of Neurology, Philipps University Marburg, Marburg, Germany
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Florin Ratajczak
- Siemens Healthineers, Digital Technology and Innovation, Erlangen, Germany
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Carsten Eggers
- Department of Neurology, Philipps University Marburg, Marburg, Germany
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David Pedrosa
- Department of Neurology, Philipps University Marburg, Marburg, Germany
| Published: | September 27, 2021 |
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Outline
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Background and status of research: Parkinson's disease (PD) is an incurable neurodegenerative disease, strongly affecting the patient’s quality of life. Persons with PD (PwPD) have complex care requirements in terms of motor and non-motor aspects. However, many healthcare systems, including Germany, lack integrated care delivery pathways to address these complex care needs.
One possibility to address this shortcoming might be the implementation of personalized care delivery. Within the scientific literature, interventions aiming to personalize care for PD improving patients’ quality of life have been described. Additionally, the importance of specialized staff, especially Parkinson Nurses, for enabling integrating and personalizing care delivery in PD has been recognized. However, to date, no systematic overview of the concrete tasks that PD nurses undertake to personalize care, nor any analysis of the overall effectiveness of improving patients’ quality of life with the help of such interventions exists.
Question and objective: The contribution aims to address the following questions:
- What are the existing models of personalized care for PwPDs in which Parkinson Nurses (PN) are involved?
- What are the settings in which the models of personalized care for PwPDs are implemented and what is the role of the involved PN?
- Does personalized care improve the quality of life of PwPDs compared to standardized care?
The contribution aims to present the empirical findings related to these questions and to discuss the implications that can be drawn from the results for the organization of healthcare delivery for Parkinson's Disease in Germany.
Method/hypothesis: We conducted a systematic review of published personalized care models involving PN and a meta-analysis of randomized, controlled trials examining personalized care versus standard care. The primary outcome is health-related quality of life using a validated PD scale (PDQ-39). By means of the model of personalized care we aim at identifying relevant dimensions. The study protocol was submitted to PROSPERO (CRD42021236755) on February 11, 2021, and registration was confirmed on March 15, 2021.
Results: The review process started on March 1st and is expected to be completed by 31rd April 2021. An updated version of the abstract will be provided as soon as possible, but in any case, before June 2021.
Discussion:The discussion will focus on the implications resulting from this systematic review for the German healthcare system, such as, structural and organizational requirements for the implementation of personalized healthcare delivery with the help of PN. Additionally, conditions for future (interdisciplinary) research will be elaborated.
Implications: The contribution may provide food for thought for the design of profession-oriented health service research and practice for PwPDs in Germany.
Appeal: We need to facilitate the personalization of healthcare delivery for PwPDs and Parkinson Nurses may help us to do so.
