Specialist approaches to prognostic counseling in isolated REM sleep behavior disorder

Luke N. Teigen, Richard R. Sharp, Jessica R. Hirsch, Emmaling Campbell, Paul C. Timm, David J. Sandness, John C. Feemster, Thomas R. Gossard, Sarah M. Faber, Tyler A. Steele, Sonia Rivera, Mithri R. Junna, Melissa C. Lipford, Maja Tippmann-Peikert, Suresh Kotagal, Yo El Ju, Michael Howell, Carlos H. Schenck, Aleksandar Videnovic, Poul JennumBirgit Hogl, Ambra Stefani, Isabelle Arnulf, Anna Heidbreder, Simon Lewis, Stuart J. McCarter, Bradley F. Boeve, Michael H. Silber, Erik K. St Louis

Research output: Contribution to journalArticlepeer-review


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.

Original languageEnglish (US)
Pages (from-to)107-112
Number of pages6
JournalSleep Medicine
StatePublished - Mar 2021

Bibliographical note

Funding Information:
This publication was supported by NIH/NCRR/NCATS CCaTS Grant Number UL1 TR002377 , and by NIH/NIA R34AG056639 (NAPS). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH. We are additionally grateful for secretarial support in manuscript preparation and submission from Ms. Lea Dacy, Mayo Clinic Department of Neurology.

Funding Information:
Dr. Stefani reports grants from Axovant and travel support from UCB Pharmaceuticals and Habel Medizintechnik , outside the submitted work.

Funding Information:
Dr. Boeve reports personal fees from the Tau Consortium Scientific Advisory Board and grants from Biogen , NIH , the Mangurian Foundation , Alector , the Little Family Foundation , EIP Pharma , outside the submitted work.

Publisher Copyright:
© 2020


  • Communication
  • Counseling
  • Ethics
  • Physician–patient relationship
  • Prognosis
  • REM sleep behavior disorder


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