Specialist approaches to prognostic counseling in isolated REM sleep behavior disorder

Research output: Contribution to journalJournal articleResearchpeer-review

  • 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
  • Birgit Hogl
  • Ambra Stefani
  • Isabelle Arnulf
  • Anna Heidbreder
  • Simon Lewis
  • Stuart J. McCarter
  • Bradley F. Boeve
  • Michael H. Silber
  • Erik K. St Louis

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
JournalSleep Medicine
Volume79
Pages (from-to)107-112
ISSN1389-9457
DOIs
Publication statusPublished - 2021

Bibliographical note

Publisher Copyright:
© 2020

    Research areas

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

ID: 305026498