Abstract Details

Title Patient Preferences for Prognostic Counseling in Idiopathic/Isolated REM Sleep Behavior Disorder

Topic Sleep

Presentation(s) S9 - Sleep: Highlight Presentations on RBD (2:40 PM-2:48 PM)

Poster/Presentation
Number 005

Objective To examine patient preferences regarding prognostic counseling for idiopathic/isolated REM sleep behavior disorder (iRBD).

Background iRBD carries a 90% long term risk for phenoconversion to an overt synucleinopathy such as Parkinson’s disease (PD) or dementia with Lewy bodies (DLB). To our knowledge, no previous research has examined patient preferences regarding iRBD prognostic counseling.

Design/Methods 122 participants with iRBD in the Mayo Clinic iRBD Patient Registry enrolled. Participants were sent an email survey concerning prognostic counseling, as well as qualitative and multiple choice questions examining their experience in being diagnosed with RBD.

Results Of 81 respondents (67.2% response rate) the majority were men (74.0%) aged 65.7 ± 9.7 years. Responses indicated a strong preference toward receiving prognostic information, and 92.5% respondents felt knowledge concerning neurodegenerative disease risk was important, while 87.6% felt prognostic discussion was important to maintain trust in their physician. Additionally, 95.7% indicated they desired more information, while only 4.3% would have desired less information regarding prognostic risk following iRBD diagnosis. Most respondents agreed strongly that prognostic information was important for discussions with their family and friends and future life planning, and expressed interest in learning more about future neuroprotective therapies and parkinsonism and dementia treatments.

Conclusions iRBD patients indicated a strong preference for disclosure of neurodegenerative prognostic risk information, preferred more rather than less information, and felt prognostic information was important for family discussions and life planning. This data may inform development of future discussion and decision aids regarding iRBD prognostic counseling.

Authors/Disclosures
Thomas Gossard, MD PRESENTER	Mr. Gossard has nothing to disclose.
	No disclosure on file
	No disclosure on file
John C. Feemster, MD (Johns Hopkins Hospital)	Mr. Feemster has nothing to disclose.
Stuart McCarter, MD (Mayo Clinic)	Dr. McCarter has received research support from NIH.
Erik K. St. Louis, MD (Mayo Clinic)	The institution of Dr. St. Louis has received research support from NIH. Dr. St. Louis has received publishing royalties from a publication relating to health care. Dr. St. Louis has received publishing royalties from a publication relating to health care.

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