Risk willingness in multiple system atrophy and Parkinson’s disease understanding patient preferences

  1. Bernhardt, Alexander Maximilian ORCID logo
  2. Oeller, Marc ORCID logo
  3. Friedrich, Isabel
  4. Kocakavuk, Emre
  5. Nachman, Eliana ORCID logo
  6. Peikert, Kevin ORCID logo
  7. Roderigo, Malte
  8. Rossmann, Andreas
  9. Schröter, Tabea
  10. Wilhelm, Lea Olivia
  11. Prell, Tino ORCID logo
  12. van Riesen, Christoph
  13. Nieweler, Johanna
  14. Katzdobler, Sabrina
  15. Weiler, Markus ORCID logo
  16. Jacobi, Heike
  17. Warnecke, Tobias
  18. Claus, Inga
  19. Palleis, Carla
  20. Breimann, Stephan
  21. Falkenburger, Bjoern ORCID logo
  22. Brandt, Moritz
  23. Hermann, Andreas
  24. Rumpf, Jost-Julian
  25. Classen, Joseph ORCID logo
  26. Höglinger, Günter
  27. Gandor, Florin ORCID logo
  28. Levin, Johannes ORCID logo
  29. Giese, Armin
  30. Janzen, Annette
  31. Oertel, Wolfgang Hermann

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1000 Titel
  • Risk willingness in multiple system atrophy and Parkinson’s disease understanding patient preferences
1000 Autor/in
  1. Bernhardt, Alexander Maximilian |
  2. Oeller, Marc |
  3. Friedrich, Isabel |
  4. Kocakavuk, Emre |
  5. Nachman, Eliana |
  6. Peikert, Kevin |
  7. Roderigo, Malte |
  8. Rossmann, Andreas |
  9. Schröter, Tabea |
  10. Wilhelm, Lea Olivia |
  11. Prell, Tino |
  12. van Riesen, Christoph |
  13. Nieweler, Johanna |
  14. Katzdobler, Sabrina |
  15. Weiler, Markus |
  16. Jacobi, Heike |
  17. Warnecke, Tobias |
  18. Claus, Inga |
  19. Palleis, Carla |
  20. Breimann, Stephan |
  21. Falkenburger, Bjoern |
  22. Brandt, Moritz |
  23. Hermann, Andreas |
  24. Rumpf, Jost-Julian |
  25. Classen, Joseph |
  26. Höglinger, Günter |
  27. Gandor, Florin |
  28. Levin, Johannes |
  29. Giese, Armin |
  30. Janzen, Annette |
  31. Oertel, Wolfgang Hermann |
1000 Verlag Nature Publishing Group UK
1000 Erscheinungsjahr 2024
1000 Publikationstyp
  1. Artikel |
1000 Online veröffentlicht
  • 2024-08-15
1000 Erschienen in
1000 Quellenangabe
  • 10(1):158
1000 Copyrightjahr
  • 2024
1000 Lizenz
1000 Verlagsversion
  • https://doi.org/10.1038/s41531-024-00764-5 |
  • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11327309/ |
1000 Publikationsstatus
1000 Begutachtungsstatus
1000 Sprache der Publikation
1000 Abstract/Summary
  • <jats:title>Abstract</jats:title><jats:p>Disease-modifying therapeutics in the α-synucleinopathies multiple system atrophy (MSA) and Parkinson’s Disease (PD) are in early phases of clinical testing. Involving patients’ preferences including therapy-associated risk willingness in initial stages of therapy development has been increasingly pursued in regulatory approval processes. In our study with 49 MSA and 38 PD patients, therapy-associated risk willingness was quantified using validated standard gamble scenarios for varying severities of potential drug or surgical side effects. Demonstrating a non-gaussian distribution, risk willingness varied markedly within, and between groups. MSA patients accepted a median 1% risk [interquartile range: 0.001–25%] of sudden death for a 99% [interquartile range: 99.999–75%] chance of cure, while PD patients reported a median 0.055% risk [interquartile range: 0.001–5%]. Contrary to our hypothesis, a considerable proportion of MSA patients, despite their substantially impaired quality of life, were not willing to accept increased therapy-associated risks. Satisfaction with life situation, emotional, and nonmotor disease burden were associated with MSA patients’ risk willingness in contrast to PD patients, for whom age, and disease duration were associated factors. An individual approach towards MSA and PD patients is crucial as direct inference from disease (stage) to therapy-associated risk willingness is not feasible. Such studies may be considered by regulatory agencies in their approval processes assisting with the weighting of safety aspects in a patient-centric manner. A systematic quantitative assessment of patients’ risk willingness and associated features may assist physicians in conducting individual consultations with patients who have MSA or PD by facilitating communication of risks and benefits of a treatment option.</jats:p>
1000 Sacherschließung
lokal Article
lokal /692/308/153
lokal /631/154/433
lokal /692/617/375/1718
lokal article
1000 Fächerklassifikation (DDC)
1000 Liste der Beteiligten
  1. https://orcid.org/0000-0002-2572-5062|https://orcid.org/0000-0003-0597-5950|https://frl.publisso.de/adhoc/uri/RnJpZWRyaWNoLCBJc2FiZWw=|https://frl.publisso.de/adhoc/uri/S29jYWthdnVrLCBFbXJl|https://orcid.org/0000-0002-2069-6469|https://orcid.org/0000-0002-0845-2453|https://frl.publisso.de/adhoc/uri/Um9kZXJpZ28sIE1hbHRl|https://frl.publisso.de/adhoc/uri/Um9zc21hbm4sIEFuZHJlYXM=|https://frl.publisso.de/adhoc/uri/U2NocsO2dGVyLCBUYWJlYQ==|https://frl.publisso.de/adhoc/uri/V2lsaGVsbSwgTGVhIE9saXZpYQ==|https://orcid.org/0000-0002-6423-3108|https://frl.publisso.de/adhoc/uri/dmFuIFJpZXNlbiwgQ2hyaXN0b3Bo|https://frl.publisso.de/adhoc/uri/Tmlld2VsZXIsIEpvaGFubmE=|https://frl.publisso.de/adhoc/uri/S2F0emRvYmxlciwgU2FicmluYQ==|https://orcid.org/0000-0002-8942-7662|https://frl.publisso.de/adhoc/uri/SmFjb2JpLCBIZWlrZQ==|https://frl.publisso.de/adhoc/uri/V2FybmVja2UsIFRvYmlhcw==|https://frl.publisso.de/adhoc/uri/Q2xhdXMsIEluZ2E=|https://frl.publisso.de/adhoc/uri/UGFsbGVpcywgQ2FybGE=|https://frl.publisso.de/adhoc/uri/QnJlaW1hbm4sIFN0ZXBoYW4=|https://orcid.org/0000-0002-2387-526X|https://frl.publisso.de/adhoc/uri/QnJhbmR0LCBNb3JpdHo=|https://frl.publisso.de/adhoc/uri/SGVybWFubiwgQW5kcmVhcw==|https://frl.publisso.de/adhoc/uri/UnVtcGYsIEpvc3QtSnVsaWFu|https://orcid.org/0000-0001-7182-6967|https://frl.publisso.de/adhoc/uri/SMO2Z2xpbmdlciwgR8O8bnRlcg==|https://orcid.org/0000-0003-2874-9817|https://orcid.org/0000-0001-5092-4306|https://frl.publisso.de/adhoc/uri/R2llc2UsIEFybWlu|https://frl.publisso.de/adhoc/uri/SmFuemVuLCBBbm5ldHRl|https://frl.publisso.de/adhoc/uri/T2VydGVsLCBXb2xmZ2FuZyBIZXJtYW5u
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  • DeepGreen-ID: 672b1bee9a064dfcb6a179c37c1bac00 ; metadata provieded by: DeepGreen (https://www.oa-deepgreen.de/api/v1/), LIVIVO search scope life sciences (http://z3950.zbmed.de:6210/livivo), Crossref Unified Resource API (https://api.crossref.org/swagger-ui/index.html), to.science.api (https://frl.publisso.de/), ZDB JSON-API (beta) (https://zeitschriftendatenbank.de/api/), lobid - Dateninfrastruktur für Bibliotheken (https://lobid.org/resources/search) ;
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1000 Erstellt am 2025-07-06T08:06:25.452+0200
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