Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Jan 11;46(1):zsac244.
doi: 10.1093/sleep/zsac244.

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

Thomas R Gossard  1   2   3 , Luke N Teigen  1   2   3 , Seeley Yoo  1 , Paul C Timm  1   2   3 , Jack Jagielski  4 , Noor Bibi  1 , John C Feemster  1   2   3   4 , Tyler Steele  1   2   3   4 , Diego Z Carvalho  1   2   3 , Mithri R Junna  4 , Melissa C Lipford  1   4 , Maja Tippmann Peikert  1   2   3   4 , Laurene LeClair-Visonneau  4 , Stuart J McCarter  1 , Bradley F Boeve  4 , Michael H Silber  1   4 , Jessica Hirsch  5 , Richard R Sharp  5 , Erik K St Louis  1   2   3   4   6
Affiliations

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

Thomas R Gossard et al. Sleep. .

Abstract

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.

Keywords: 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.

PubMed Disclaimer

Figures

Graphical Abstract
Graphical Abstract
Figure 1
Figure 1
. Patient prognosis. Subjects (n = 81) selected only one response to each statement. Most patients (92.5%) indicated they strongly or somewhat agreed that receiving prognostic counseling regarding risk for developing Parkinson disease or another neurological condition was important, and belief that this knowledge would be helpful for future life planning.
Figure 2
Figure 2
. Concerns about Prognostic Impact on Family and Friends. The majority (79.0%) of patients had discussed the risk of parkinsonism with their family and friends, and felt it was important for their family/friends to know about their risk (77.8%); however, most (61.7%) were concerned about family and friends’ anxiousness related to their prognosis.
Figure 3.
Figure 3.
Provider prognostic communication and relationships. Responses indicated that most (75.3%) patients may feel loss of trust in their provider if prognostic risk for parkinsonism was not discussed, that providers generally did not ask about preferences for counseling, but most (56.7%) did not feel asking about patient preferences for counseling was necessary; only a minority preferred inquiry regarding their values and preferences (9.9%) before prognostic counseling discussions were initiated.
Figure 4.
Figure 4.
RBD and Parkinsonism Knowledge. Subjects generally indicated a feeling of good understanding about RBD and its relationship to parkinsonism, prognosis, and strong engagement with a desire to learn more about their RBD and prognosis. Approximately half of patients indicated they had a good understanding of what living with parkinsonism or dementia would be like or planned to engage with support groups.
Figure 5.
Figure 5.
The Impact of RBD Prognosis on Future Life Plans. Subjects selected one response to each statement listed, with responses demonstrating a spectrum of emotions and opinions, with most (55.6%) feeling RBD diagnosis did not alter their life planning and 67.9% had no change in level of motivation or lost enthusiasm. A majority (60.4%) indicated a previous understanding about the relationship between RBD and Parkinson disease, but a minority wished for a support group for RBD (49.4%).
See this image and copyright information in PMC

References

    1. Haba-Rubio J, et al. . Prevalence and determinants of rapid eye movement sleep behavior disorder in the general population. Sleep. 2018;41(2):zsx197. doi:10.1093/sleep/zsx197. - DOI - PubMed
    1. Iranzo A, et al. . Neurodegenerative disorder risk in idiopathic REM sleep behavior disorder: study in 174 patients. PLoS One. 2014;9(2):e89741. doi:10.1371/journal.pone.0089741. - DOI - PMC - PubMed
    1. Claassen DO, et al. . REM sleep behavior disorder preceding other aspects of synucleinopathies by up to half a century. Neurology. 2010;75(6):494–499. doi:10.1212/WNL.0b013e3181ec7fac. - DOI - PMC - PubMed
    1. Schenck CH, et al. . Delayed emergence of a parkinsonian disorder or dementia in 81% of older men initially diagnosed with idiopathic rapid eye movement sleep behavior disorder: a 16-year update on a previously reported series. Sleep Med. 2013;14(8):744–748. doi:10.1016/j.sleep.2012.10.009. - DOI - PubMed
    1. Iranzo A, et al. . Characterization of patients with longstanding idiopathic REM sleep behavior disorder. Neurology. 2017;89(3):242–248. doi:10.1212/WNL.0000000000004121. - DOI - PubMed

Publication types