Dataset Information

Building a Parkinson-Network-Experiences from Germany.

ABSTRACT: 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.

SUBMITTER: van Munster M

PROVIDER: S-EPMC7563415 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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Building a Parkinson-Network-Experiences from Germany.

van Munster Marlena M Tönges Lars L Loewenbrück Kai F KF Warnecke Tobias T Eggers Carsten C

Journal of clinical medicine 20200825 9

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 templat ...[more]

PMID: 32854328

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Project description:BackgroundGenetic testing has multigenerational and familial repercussions. However, the "trickle-down effect" of providing genetic counseling and testing to family members at risk after an initial identification of a pathogenic variant in a medically actionable gene has been poorly understood.MethodsThree probands were identified during the pharmacogenetics research phase of eMERGEII (electronic MEdical Record and Genomics, phase II) to have variants in genes associated with autosomal dominant adult-onset disorders determined to be actionable by the American College of Medical Genetics (ACMG). Two of the three probands had variants that were classified as pathogenic and the third proband had a variant ultimately classified of uncertain significance, but of concern due to the proband's own phenotype. All probands had additional family members at risk for inheriting the variant. Two of the three probands had family members who received their medical care from the same health care system, Group Health Cooperative (GHC). It was recommended that the proband contact their family members at risk to be referred to genetic counseling for consideration of genetic testing.ResultsThe two probands with pathogenic variants contacted some of their family members at risk. Individuals contacted included children and adult grandchildren, particularly if they received their medical care at GHC. To the best of our knowledge, siblings and more distant relatives at risk were not informed by the proband of their genetic risk.ConclusionsEstablishing a family network is essential to disseminate knowledge of genetic risk. These three initial cases describe our experience of contacting eMERGE participants with identified variants, providing the probands with appropriate genetic counseling and care coordination, and recommendations for contacting family members at risk. Greater challenges were observed for coordinating genetics care for family members and extending the family network to include other relatives at risk.

Project description:BackgroundThe effects of adverse childhood experiences (ACEs) on mental health, self-regulatory capacities, and overall resilience are well-known. Given such effects, ACEs may play a role in how individuals adjust to challenges later in life. Of interest in this study is the transition to university, a time of heightened stress when adapting to circumstances is required and when those with ACEs may need additional in-the-moment support to exercise resilience. A smartphone app may provide a worthwhile and readily accessible medium for a resilience intervention, provided behavioral outcomes are adequately evaluated.ObjectiveThis study evaluates the impact of an innovative, smartphone app-based resilience intervention. The JoyPop app was designed to promote resilience through the use of self-regulatory skills such as emotion regulation and executive functioning. Among a sample of first-year undergraduate students, we explored whether use of the app would be associated with positive changes in resilience and related outcomes, and whether these benefits were influenced by level of childhood adversity.MethodsParticipants (N=156) were requested to use the JoyPop app for 4 weeks, at least twice daily. Changes in resilience, emotion regulation, executive functioning, and depression were assessed after 2 and 4 weeks of app usage using multilevel modeling.ResultsThe sample of 156 participants included 123 females and 33 males, with a mean age of 19.02 years (SD 2.90). On average participants used the app on 20.43 of the possible 28 days (SD 7.14). App usage was associated with improvements in emotion regulation (χ21=44.46; P<.001), such that it improved by 0.25 points on the 18-point scale for each additional day of app usage, and symptoms of depression (χ21=25.12; P<.001), such that depression symptoms were reduced by .08 points on the 9-point scale with each additional day of app usage. An interaction between ACEs and days of app usage existed for emotion regulation, such that participants with more adversity evidenced a faster rate of change in emotion regulation (P=.02).ConclusionsResults highlight that daily incorporation of an app-based resilience intervention can help youth who have experienced adversity to improve emotion regulation skills and experience reductions in depression. The JoyPop app represents an important step forward in the integration of resilience intervention research with a technology-based medium that provides in-the-moment support.

Dataset Information

Building a Parkinson-Network-Experiences from Germany.

Publications

Building a Parkinson-Network-Experiences from Germany.

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