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Journal Articles Sleep Medicine Year : 2021

Specialist approaches to prognostic counseling in isolated REM sleep behavior disorder

Luke Teigen
  • Function : Author
Richard Sharp
  • Function : Author
Jessica Hirsch
  • Function : Author
Emmaling Campbell
  • Function : Author
Paul Timm
  • Function : Author
David Sandness
  • Function : Author
John Feemster
  • Function : Author
Thomas Gossard
  • Function : Author
Sarah Faber
  • Function : Author
Tyler Steele
  • Function : Author
Sonia Rivera
  • Function : Author
Mithri Junna
  • Function : Author
Melissa Lipford
  • Function : Author
Maja Tippmann-Peikert
  • Function : Author
Suresh Kotagal
Yo-El Ju
  • Function : Author
Michael Howell
  • Function : Author
Carlos Schenck
  • Function : Author
Aleksandar Videnovic
  • Function : Author
Poul Jennum
Birgit Hogl
  • Function : Author
Ambra Stefani
  • Function : Author
Anna Heidbreder
  • Function : Author
Simon Lewis
  • Function : Author
Stuart Mccarter
  • Function : Author
Bradley Boeve
  • Function : Author
Michael Silber
  • Function : Author
Erik St Louis
  • Function : Author

Abstract

Objectives/background: Most middle-aged and older adult patients with isolated (idiopathic) REM sleep behavior disorder (RBD) eventually develop parkinsonism, dementia with Lewy bodies, or multiple system atrophy. We aimed to describe the current sleep medicine specialist approach toward RBD prognostic counseling, and to determine physician beliefs and characteristics that impact provision of counseling. Patients/methods: We surveyed 70 sleep medicine physicians with RBD expertise for demographic information, counseling practices, and their beliefs and understandings concerning the association between RBD and synucleinopathies, among other questions. Responses were summarized by descriptive statistics. Results: Among the 44 respondents (63% response rate), 41 (93.2%) regularly provided prognostic counseling for most RBD patients, but only 31.8% routinely asked about patient preferences on receiving counseling. 41.8% believed that the risk for developing overt synucleinopathy following RBD diagnosis was >80%, but only 15.9% routinely provided this detailed phenoconversion risk estimate to their patients. Most respondents were concerned that RBD prognostic counseling could adversely impact on the patient's and family's mental health. Conclusions: Most expert RBD sleep clinicians routinely counsel their patients regarding the high risk for phenoconversion to parkinsonism or dementia, yet relatively few routinely ask patients about their preferences for receiving this information, and fewer provide details concerning the known high risk estimates for developing a synucleinopathy. Future research should analyze patients' values and preferences in RBD populations to inform approaches toward shared decision making for RBD prognostic counseling.

Dates and versions

hal-04564369 , version 1 (30-04-2024)

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Luke Teigen, Richard Sharp, Jessica Hirsch, Emmaling Campbell, Paul Timm, et al.. Specialist approaches to prognostic counseling in isolated REM sleep behavior disorder. Sleep Medicine, 2021, 79, pp.107-112. ⟨10.1016/j.sleep.2020.12.014⟩. ⟨hal-04564369⟩
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