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

doi:10.1016/j.sleep.2020.12.014

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

Afdeling for Hjerne- og Nerveundersøgelser

Abstrakt

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.

Originalsprog	Engelsk
Tidsskrift	Sleep Medicine
Vol/bind	79
Sider (fra-til)	107-112
Antal sider	6
ISSN	1389-9457
DOI	https://doi.org/10.1016/j.sleep.2020.12.014
Status	Udgivet - mar. 2021

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10.1016/j.sleep.2020.12.014

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Citationsformater

Teigen, L. N., Sharp, R. R., Hirsch, J. R., Campbell, E., Timm, P. C., Sandness, D. J., Feemster, J. C., Gossard, T. R., Faber, S. M., Steele, T. A., Rivera, S., Junna, M. R., Lipford, M. C., Tippmann-Peikert, M., Kotagal, S., Ju, Y-E., Howell, M., Schenck, C. H., Videnovic, A., ... St Louis, E. K. (2021). Specialist approaches to prognostic counseling in isolated REM sleep behavior disorder. Sleep Medicine, 79, 107-112. https://doi.org/10.1016/j.sleep.2020.12.014

Teigen, LN, Sharp, RR, Hirsch, JR, Campbell, E, Timm, PC, Sandness, DJ, Feemster, JC, Gossard, TR, Faber, SM, Steele, TA, Rivera, S, Junna, MR, Lipford, MC, Tippmann-Peikert, M, Kotagal, S, Ju, Y-E, Howell, M, Schenck, CH, Videnovic, A, Jennum, P, Hogl, B, Stefani, A, Arnulf, I, Heidbreder, A, Lewis, S, McCarter, SJ, Boeve, BF, Silber, MH & St Louis, EK 2021, 'Specialist approaches to prognostic counseling in isolated REM sleep behavior disorder', Sleep Medicine, bind 79, s. 107-112. https://doi.org/10.1016/j.sleep.2020.12.014

@article{76144bfdb27b4908af5a22c59dbf0c10,

title = "Specialist approaches to prognostic counseling in isolated REM sleep behavior disorder",

abstract = "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.",

keywords = "Aged, Counseling, Humans, Middle Aged, Multiple System Atrophy, Parkinson Disease/complications, Prognosis, REM Sleep Behavior Disorder/diagnosis",

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

note = "Copyright {\textcopyright} 2020. Published by Elsevier B.V.",

year = "2021",

month = mar,

doi = "10.1016/j.sleep.2020.12.014",

language = "English",

volume = "79",

pages = "107--112",

journal = "Sleep Medicine",

issn = "1389-9457",

publisher = "Elsevier BV",

}

TY - JOUR

T1 - Specialist approaches to prognostic counseling in isolated REM sleep behavior disorder

AU - Teigen, Luke N

AU - Sharp, Richard R

AU - Hirsch, Jessica R

AU - Campbell, Emmaling

AU - Timm, Paul C

AU - Sandness, David J

AU - Feemster, John C

AU - Gossard, Thomas R

AU - Faber, Sarah M

AU - Steele, Tyler A

AU - Rivera, Sonia

AU - Junna, Mithri R

AU - Lipford, Melissa C

AU - Tippmann-Peikert, Maja

AU - Kotagal, Suresh

AU - Ju, Yo-El

AU - Howell, Michael

AU - Schenck, Carlos H

AU - Videnovic, Aleksandar

AU - Jennum, Poul

AU - Hogl, Birgit

AU - Stefani, Ambra

AU - Arnulf, Isabelle

AU - Heidbreder, Anna

AU - Lewis, Simon

AU - McCarter, Stuart J

AU - Boeve, Bradley F

AU - Silber, Michael H

AU - St Louis, Erik K

PY - 2021/3

Y1 - 2021/3

N2 - 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.

AB - 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.

KW - Aged

KW - Counseling

KW - Humans

KW - Middle Aged

KW - Multiple System Atrophy

KW - Parkinson Disease/complications

KW - Prognosis

KW - REM Sleep Behavior Disorder/diagnosis

UR - http://www.scopus.com/inward/record.url?scp=85099659775&partnerID=8YFLogxK

U2 - 10.1016/j.sleep.2020.12.014

DO - 10.1016/j.sleep.2020.12.014

M3 - Journal article

C2 - 33486257

VL - 79

SP - 107

EP - 112

JO - Sleep Medicine

JF - Sleep Medicine

SN - 1389-9457

ER -

Specialist approaches to prognostic counseling in isolated REM sleep behavior disorder

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