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. 2020 Aug 28;9(9):2787.
doi: 10.3390/jcm9092787.

Structured Care and Self-Management Education for Persons with Parkinson's Disease: Why the First Does Not Go without the Second-Systematic Review, Experiences and Implementation Concepts from Sweden and Germany

Jenny Tennigkeit  1   2 , Tim Feige  1   2 , Maria Haak  3   4 , Carina Hellqvist  5 , Ümran S Seven  6 , Elke Kalbe  6 , Jaqueline Schwarz  7 , Tobias Warnecke  8 , Lars Tönges  9   10 , Carsten Eggers  11 , Kai F Loewenbrück  1   2
Affiliations

Structured Care and Self-Management Education for Persons with Parkinson's Disease: Why the First Does Not Go without the Second-Systematic Review, Experiences and Implementation Concepts from Sweden and Germany

Jenny Tennigkeit et al. J Clin Med. .

Abstract

Integrated care is regarded as a key for care delivery to persons with chronic long-term conditions such as Parkinson's disease. For persons with Parkinson's disease, obtaining self-management support is a top priority in the context of integrated care. Self-management is regarded as a crucial competence in chronic diseases since the affected persons and their caregivers inevitably take up the main responsibility when it comes to day-to-day management. Formal self-management education programs with the focus on behavioral skills relevant to the induction and maintenance of behavioral change have been implemented as a standard in many chronic long-term conditions. However, besides the example of the Swedish National Parkinson School, the offers for persons with Parkinson's disease remain fragmented and limited in availability. Today, no such program is implemented as a nationwide standard in Germany. This paper provides (1) a systematic review on structured self-management education programs specifically designed or adopted for persons with Parkinson's disease, (2) presents the Swedish National Parkinson School as an example for a successfully implemented nationwide program and (3) presents a concept for the design, evaluation and long-term implementation of a future-orientated self-management education program for persons with Parkinson's disease in Germany.

Keywords: Parkinson disease; education; integrated care; networks; self-management.

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Conflict of interest statement

J.S. is the CEO of the Tumaini Institut für Präventionsmanagement GmbH, a SME working in the field of prevention of lifestyle-associated diseases and developing and implementing patient education programs for chronic diseases. Lars Tönges has received travel funding and/or speaker honoraria from Abbvie, Bayer, Bial, Desitin, G.E., U.C.B., and Zambon, and consulted for Abbvie, Bayer, Bial, Desitin, U.C.B., and Zambon, in the last 3 years. C.E. received in the last 12 months payments as a consultant for Abbvie Inc. C.E. received honoraria as a speaker from Abbvie Inc. He received payments as a consultant for Abbvie Inc. and Philyra Inc. K.F.L. has received travel funding and/or speaker honoraria from Abbvie and Licher M.T. and consulted for Abbvie and Stadapharm, in the last 3 years. The other authors do not report any conflict of interest.

Figures

Figure 1
Figure 1
Modular elements of the Swedish National Parkinson School.
Figure 2
Figure 2
“Kaiser pyramid” about the interaction between patient disease-related self-management and professional management. In chronic diseases with little complexity in disease burden and/or therapeutic needs (level 3), self-management by persons with chronic conditions (PwCDs) is the major contributor to overall management, relative to the minor contribution of professional disease management. The more complex the disease and related therapeutic needs become (levels 2 and 1), the smaller becomes the relative contribution of self-management in comparison to professional management. The higher the relevance of professional management becomes, the more important becomes professional management support, e.g., by structured case management. Adopted from [8].
Figure 3
Figure 3
Structural effects model for SME interventions according to the theory of behavioral change. Adopted from [5].
Figure 4
Figure 4
Sequential phases suggested for needs assessment (phase 1), design (phase 2), evaluation for effectiveness (phase 3), and for certification and nationwide implementation of a structured SME program for PwPDs (phase 4).
Figure 5
Figure 5
Concept for phase 1: structured assessment of needs of PwPDs and their caregivers by disease-stage specific focus groups (upper panel). Structured expert-based Delphi consensus process on expert recommendations on content, format and objectives of a PD-specific PME program. * Advanced disease stage will be defined according to [58].
Figure 6
Figure 6
Sequential steps in phase 2.
See this image and copyright information in PMC

References

    1. Minkman M. The development model for integrated care: A validated tool for evaluation and development. J. Integr. Care. 2016;24:38–52. doi: 10.1108/JICA-01-2016-0005. - DOI
    1. Ouwens M., Wollersheim H., Hermens R., Hulscher M., Grol R. Integrated care programmes for chronically ill patients: A review of systematic reviews. Int. J. Qual. Health Care. 2005;17:141–146. doi: 10.1093/intqhc/mzi016. - DOI - PubMed
    1. Lorig K.R., Holman H.R. Self-management education: History, definition, outcomes, and mechanisms. Ann. Behav. Med. 2003;26:1–7. doi: 10.1207/S15324796ABM2601_01. - DOI - PubMed
    1. Medicine I.O. In: The 1st Annual Crossing the Quality Chasm Summit: A Focus on Communities. Adams K., Greiner A.C., Corrigan J.M., editors. The National Academies Press; Washington, DC, USA: 2004. p. 176. - PubMed
    1. Radder D.L., Nonnekes J., van Nimwegen M., Eggers C., Abbruzzese G., Alves G., Browner N., Chaudhuri K., Ebersbach G., Ferreira J.J. Recommendations for the organization of multidisciplinary clinical care teams in parkinson’s disease. J. Parkinson’s Dis. 2020;10:1087–1098. doi: 10.3233/JPD-202078. - DOI - PMC - PubMed