Recommendations for Standards of Network Care for Patients with Parkinson’s Disease in Germany

Prell, Tino; Siebecker, Frank; Lorrain, Michael; Eggers, Carsten; Lorenzl, Stefan; Klucken, Jochen; Warnecke, Tobias; Buhmann, Carsten; Tönges, Lars; Ehret, R.; Wellach, Ingmar; Wolz, Martin

doi:10.3390/jcm9051455

Cited by 19 publications

(19 citation statements)

References 49 publications

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“…A framework concept for the structured/integrated care of patients with PD in Germany was already proposed in 2007 [56], but newer approaches are available [57]. In this context, the PDNS in particular may play a key role.…”

Section: Discussionmentioning

confidence: 99%

Resource Utilization of Patients with Parkinson’s Disease in the Late Stages of the Disease in Germany: Data from the CLaSP Study

et al. 2021

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Objective The Care of Late-Stage Parkinsonism (CLaSP) study aimed to collect qualitative and standardized patient data in six European countries (France, Germany, Netherlands, Portugal, UK, Sweden) to enable a detailed evaluation of the underexplored late stages of the disease (Hoehn and Yahr stage > 3) using clinical, neuropsychological, behavioral, and health economic data. The aim of this substudy was to provide a health economic evaluation for the German healthcare system. Methods In Germany, 228 patients were included in the study. Costs were calculated from a societal perspective for a 3-month period. Univariate analyses were performed to identify cost-driving predictors. Total and direct costs were analyzed using a generalized linear model with a γ-distributed dependent variable and log link function. Indirect costs were analyzed using a binomial generalized linear model with probit link function. Results The mean costs for the 3-month period were approximately €20,000. Informal care costs and hospitalization are approximately €11,000 and €5000. Direct costs amounted to 89% of the total costs, and the share of indirect costs was 11%. Independent predictors of total costs were the duration of the disease and age. The duration of the disease was the main independent predictor of direct costs, whereas age was an independent predictor of indirect costs. Discussion Costs in the late stage of the disease are considerably higher than those found in earlier stages. Compared to the latter, the mean number of days in hospital and the need for care is increasing. Informal caregivers provide most of the care. Clinical Trial Registration The protocol was registered at ClinicalTrials.gov as NCT02333175 on

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Section: Discussionmentioning

confidence: 99%

Resource Utilization of Patients with Parkinson’s Disease in the Late Stages of the Disease in Germany: Data from the CLaSP Study

et al. 2021

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“…However, in large parts of the world, Parkinson networks are not present, which remains an issue that should be addressed in the future [ 12 ]. In Germany it has been acknowledged that results from other countries are only transferable to a limited extent since they focus on different priorities which may not be relevant for the German context [ 32 ]. Generally, the establishment of networks remains a great challenge in Germany due to inhomogeneous regional conditions and the strict regulation and separation of the individual sectors in the German health care system [ 32 ].…”

Section: Discussionmentioning

confidence: 99%

“…In Germany it has been acknowledged that results from other countries are only transferable to a limited extent since they focus on different priorities which may not be relevant for the German context [ 32 ]. Generally, the establishment of networks remains a great challenge in Germany due to inhomogeneous regional conditions and the strict regulation and separation of the individual sectors in the German health care system [ 32 ]. Overall, German authors agree that the healthcare delivery system for PD patients must change and that more Parkinson networks are needed in the future in order to supply all PD patients in Germany [ 13 , 16 , 22 , 33 ].…”

Section: Discussionmentioning

confidence: 99%

Building a Parkinson-Network–Experiences from Germany

Munster

Tönges

Loewenbrück

et al. 2020

JCM

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Parkinson’s disease is a complex neurodegenerative disease that can be best treated with a multi-disciplinary care approach. Building care networks has been shown as a useful tool to facilitate the integration of care services and improve outcomes for patients and care providers. However, experiences and practices relating to building a network are very limited in the field of Parkinson’s disease. This paper portrays existing Parkinson networks in Germany. With the help of a standardized template, description of networks and their building-blocks, so-called modules, were collected from all over Germany. Modules were rated in terms of their expected benefit and the required effort when implementing them, with the help of an expert survey. The rating showed that some modules were perceived as more important than others, but all modules were recognized as beneficial for patients and care providers. Overall, the German experience shows that building a Parkinson network facilitates the integration of care and provides a benefit to all stakeholders involved.

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“…In the future, it should be discussed how to integrate more specific PD knowledge in community health nursing qualification, especially for supporting long term care settings and in the community. Moreover, it is essential to develop approaches how these different qualifications could create a functional network for supporting people with PD and their next of kin [ 40 ]. In particular, the role of PDS in PD telemedicine needs special attention and standardized procedures.…”

Section: Proposal Of Core Elements For Future Pds Education In Germentioning

confidence: 99%

Specialized Staff for the Care of People with Parkinson’s Disease in Germany: An Overview

Prell

Siebecker

Lorrain

et al. 2020

JCM

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Access to specialized care is essential for people with Parkinson´s disease (PD). Given the growing number of people with PD and the lack of general practitioners and neurologists, particularly in rural areas in Germany, specialized PD staff (PDS), such as PD nurse specialists and Parkinson Assistants (PASS), will play an increasingly important role in the care of people with PD over the coming years. PDS have several tasks, such as having a role as an educator or adviser for other health professionals or an advocate for people with PD to represent and justify their needs. PD nurse specialists have been established for a long time in the Netherlands, England, the USA, and Scandinavia. In contrast, in Germany, distinct PDS models and projects have been established. However, these projects and models show substantial heterogeneity in terms of access requirements, education, theoretical and practical skills, principal workplace (inpatient vs. outpatient), and reimbursement. This review provides an overview of the existing forms and regional models for PDS in Germany. PDS reimbursement concepts must be established that will foster an implementation throughout Germany. Additionally, development of professional roles in nursing and more specialized care in Germany is needed.

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Recommendations for Standards of Network Care for Patients with Parkinson’s Disease in Germany

Cited by 19 publications

References 49 publications

Resource Utilization of Patients with Parkinson’s Disease in the Late Stages of the Disease in Germany: Data from the CLaSP Study

Resource Utilization of Patients with Parkinson’s Disease in the Late Stages of the Disease in Germany: Data from the CLaSP Study

Building a Parkinson-Network–Experiences from Germany

Specialized Staff for the Care of People with Parkinson’s Disease in Germany: An Overview

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