Patient values and preferences regarding prognostic counseling in isolated REM sleep behavior disorder

Thomas R. Gossard, Luke N. Teigen, Seeley Yoo, Paul C. Timm, Jack Jagielski, Noor Bibi, John C. Feemster, Tyler Steele, Diego Z. Carvalho, Mithri R. Junna, Melissa C. Lipford, Maja Tippmann Peikert, Laurene LeClair-Visonneau, Stuart J. McCarter, Bradley F. Boeve, Michael H. Silber, Jessica Hirsch, Richard R. Sharp, Erik K. St Louis

Research output: Contribution to journalArticlepeer-review


STUDY OBJECTIVES: Isolated REM sleep behavior disorder (iRBD) carries a high lifetime risk for phenoconversion to a defined neurodegenerative disease (NDD) including Parkinson disease, dementia with Lewy bodies, and multiple system atrophy. We aimed to examine iRBD patient values and preferences regarding prognostic counseling. METHODS: One hundred thirteen iRBD patient participants enrolled in the Mayo Clinic iRBD Patient Registry were sent an email survey concerning their values and preferences concerning NDD prognostic counseling and their experiences following diagnosis with iRBD. RESULTS: Of 81 respondents (71.7% response rate), the majority were men (74.0%) with an average age of 65.7 (±9.7) years. Responses indicated a strong preference toward receiving prognostic information about possible future NDD development. 92.5% of respondents felt knowledge concerning personal NDD risk was important, while 87.6% indicated prognostic discussions were important to maintaining trust in their physician. 95.7% indicated a desire for more information, while only 4.3% desired less information regarding their NDD prognostic risk. Most respondents strongly agreed that prognostic information was important to discuss with their family and friends and inform future life planning, and most expressed interest in learning more about future neuroprotective therapies and symptomatic treatments for parkinsonism and dementia. CONCLUSIONS: Most iRBD patients indicated strong preferences for disclosure of NDD prognostic risk and indicated that prognostic information was important for family discussions and future life planning. Future broader surveys and qualitative studies of clinic-based and ultimately community dwelling iRBD patients' values and preferences are needed to guide appropriately tailored and individualized prognostic counseling approaches following iRBD diagnosis.

Original languageEnglish (US)
Issue number1
StatePublished - Jan 11 2023


  • Mayo Clinic iRBD Patient Registry
  • Parkinson disease
  • REM sleep behavior disorder
  • dementia
  • dementia with Lewy bodies
  • multiple system atrophy
  • neurodegenerative disease
  • parkinsonism
  • phenoconversion
  • prognostic counseling

ASJC Scopus subject areas

  • General Medicine


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