Advance Directives of German People with Parkinson’s Disease Are Unspecific in regard to Typical Complications

Klietz, Martin; Öcalan, Özlem; Schneider, Nils; Dressler, Dirk; Stiel, Stephanie; Wegner, Florian

doi:10.1155/2019/2107821

Cited by 8 publications

(18 citation statements)

References 31 publications

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“…Our previous study has shown that the majority of PwP have a well-prepared AD in terms of general end-of-life aspects. However, the AD hardly deals with the possibilities of specific PD therapy [13]. To our knowledge, this is the first study aiming at improving the specificity of ADs of PwP by developing 14 PD-specific recommendations to be integrated into ADs of PwP as well as to be used as instructions for attending physicians.…”

Section: Discussionmentioning

confidence: 99%

“…Furthermore, the AD is a legally binding document that comes into force when the patient is no longer able to express their own will. To be legally valid in clinical situations, the content of an AD has to be highly specific [13]. In Germany, ADs and determination of a health care proxy are two different legal documents.…”

Section: Introductionmentioning

confidence: 99%

“…In a prior study of our research group we found that a huge proportion (69.7%) of PwP in advanced stages has written an AD. Nevertheless, the content of these ADs is rather unspecific in regard to typical Parkinson's disease (PD)-related complications such as dopaminergic therapies in an end-of-life setting, non-oral advanced therapies and swallowing disorders [13]. This may be due to a very low rate of neurological consultations for AD creation [13].…”

Section: Introductionmentioning

confidence: 99%

“…Nevertheless, the content of these ADs is rather unspecific in regard to typical Parkinson's disease (PD)-related complications such as dopaminergic therapies in an end-of-life setting, non-oral advanced therapies and swallowing disorders [13]. This may be due to a very low rate of neurological consultations for AD creation [13]. There is an urgent need to specify ADs of PwP in order to consequently improve decision-making for affected patients.…”

Section: Introductionmentioning

confidence: 99%

“…The first aim of the study is to create recommendations that directly address the treating physicians and neurologists and will serve as guidelines for the temporal and content-related discussion of PD-specific ADs. Second, the study targets the development of consensus-based recommendations that address PD-specific complications in end-of-life care [13]. These recommendations could be added on demand to an already existing AD.…”

Section: Introductionmentioning

confidence: 99%

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Consensus-Based Recommendations for Advance Directives of People with Parkinson’s Disease in Regard to Typical Complications by German Movement Disorder Specialists

Klietz

Berndt

Wegner

et al. 2020

JCM

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A huge proportion of people with Parkinson’s disease (PwP) in Germany have written an advance directive (AD). However, the content of these forms in regard to specific Parkinson’s disease (PD)-related complications is rather low. There is an urgent need to specify ADs of PwP and consequently to improve decision-making concerning end-of-life aspects for affected patients. Evidence- and consensus-based PD-specific recommendations for ADs might help to close this gap. A Delphi study with two online Delphi rounds was initiated. Initial recommendations were built on findings from previous studies and derived from evidence-based literature. Consensus on recommendations was defined as ≥80% concordance regarding clarity of formulated aspects and relevance for clinical practice. A total of 22 experts (15.2% response rate) predominantly from the workgroup ‘neuro-palliative care’ in Germany performed two Delphi rounds. Consensus was achieved for 14 of 24 initially presented recommendations. Recommendations relating to dopaminergic therapy as well as to non-oral therapy options were considered important by the expert panel. The recommendations should be taken into account when developing and giving advice on ADs for PwP. Health professionals should be trained in counselling ADs of PwP and in integrating these recommendations in ADs during the disease course of PD.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Consensus-Based Recommendations for Advance Directives of People with Parkinson’s Disease in Regard to Typical Complications by German Movement Disorder Specialists

Klietz

Berndt

Wegner

et al. 2020

JCM

Self Cite

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Disease modification in Parkinsonism: obstacles and ways forward

2022

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To date, the diagnoses of Parkinson syndromes are based on clinical examination. Therefore, these specific diagnoses are made, when the neuropathological process is already advanced. However, disease modification or neuroprotection, is considered to be most effective before marked neurodegeneration has occurred. In recent years, early clinical or prodromal stages of Parkinson syndromes came into focus. Moreover, subtypes of distinct diseases will allow predictions of the individual course of the diseases more precisely. Thereby, patients will be enrolled into clinical trials with more specific disease entities and endpoints. Furthermore, novel fluid and imaging biomarkers that allow biochemical diagnoses are under development. These will lead to earlier diagnoses and earlier therapy in the future as consequence. Furthermore, therapeutic approaches will take the underlying neuropathological process of neurodegenerative Parkinson syndromes more specific into account. Specifically, future therapies will target the aggregation of aggregation-prone proteins such as alpha-synuclein and tau, the degradation of pathological aggregates, and the spreading of pathological protein aggregates throughout the brain. Many of these approaches are already in (pre)clinical development. In addition, anti-inflammatory approaches are in development. Furthermore, drug-repurposing is a feasible approach to shorten the developmental process of new drugs.

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Pedrosa,

Pedrosa

2024

Nervenheilkunde

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ZUSAMMENFASSUNGDie Parkinson-Krankheit ist eine neurodegenerative Erkrankung, die mit erhöhter Mortalität einhergeht. Die Betroffenen leiden im Verlauf der Krankheit unter einer Vielzahl von motorischen und nicht motorischen Symptomen, die ihre Lebensqualität stark beeinträchtigen können. Durch die Umsetzung von multiprofessionellen Strategien, einschließlich einer frühzeitigen Integration von palliativen Versorgungsstrukturen, kann eine holistische und individualisierte Betreuung gewährleistet werden. Dadurch ist es möglich, Probleme der Betroffenen rechtzeitig zu erkennen und angemessen zu behandeln. Die meisten Menschen mit der Parkinson-Krankheit möchten zu Hause versterben; jedoch besprechen sie ihre Wünsche für das Lebensende nur selten mit ihren Primärversorgern. Durch eine proaktive Gesprächsführung über das Lebensende können Versorger, Bedürfnisse identifizieren, patientenzentrierte Maßnahmen umzusetzen und Autonomie stärken. Dies beinhaltet auch die Erstellung von Vorausplänen für medizinische Notfälle, was sowohl den Patientenwillen nach Eintreten der Einwilligungsunfähigkeit stärkt als auch die Belastung für Familienmitglieder verringert.

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Advance Directives of German People with Parkinson’s Disease Are Unspecific in regard to Typical Complications

Cited by 8 publications

References 31 publications

Consensus-Based Recommendations for Advance Directives of People with Parkinson’s Disease in Regard to Typical Complications by German Movement Disorder Specialists

Consensus-Based Recommendations for Advance Directives of People with Parkinson’s Disease in Regard to Typical Complications by German Movement Disorder Specialists

Disease modification in Parkinsonism: obstacles and ways forward

Umfassende Versorgung bis zuletzt

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