{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,16]],"date-time":"2026-10-16T09:51:54Z","timestamp":1792144314591,"version":"4.4.0"},"reference-count":32,"publisher":"Oxford University Press (OUP)","issue":"1","license":[{"start":{"date-parts":[[2022,10,19]],"date-time":"2022-10-19T00:00:00Z","timestamp":1666137600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"funder":[{"DOI":"10.13039\/100000002","name":"NIH","doi-asserted-by":"publisher","award":["UL1 TR002377"],"award-info":[{"award-number":["UL1 TR002377"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"NIH","doi-asserted-by":"publisher","award":["R34AG056639"],"award-info":[{"award-number":["R34AG056639"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"NIA","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000097","name":"NCRR","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000097","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006108","name":"NCATS","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023,1,11]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Study Objectives<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Of 81 respondents (71.7% response rate), the majority were men (74.0%) with an average age of 65.7 (\u00b19.7) 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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>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\u2019 values and preferences are needed to guide appropriately tailored and individualized prognostic counseling approaches following iRBD diagnosis.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/sleep\/zsac244","type":"journal-article","created":{"date-parts":[[2022,10,19]],"date-time":"2022-10-19T12:17:14Z","timestamp":1666181834000},"source":"Crossref","is-referenced-by-count":24,"title":["Patient values and preferences regarding prognostic counseling in isolated REM sleep behavior disorder"],"prefix":"10.1093","volume":"46","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9231-0086","authenticated-orcid":false,"given":"Thomas R","family":"Gossard","sequence":"first","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"},{"name":"Division of Pulmonary and Critical Care Medicine , Minnesota , USA"},{"name":"Departments of Medicine , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Luke N","family":"Teigen","sequence":"additional","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"},{"name":"Division of Pulmonary and Critical Care Medicine , Minnesota , USA"},{"name":"Departments of Medicine , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Seeley","family":"Yoo","sequence":"additional","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paul C","family":"Timm","sequence":"additional","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"},{"name":"Division of Pulmonary and Critical Care Medicine , Minnesota , USA"},{"name":"Departments of Medicine , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2479-8726","authenticated-orcid":false,"given":"Jack","family":"Jagielski","sequence":"additional","affiliation":[{"name":"Neurology , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Noor","family":"Bibi","sequence":"additional","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John C","family":"Feemster","sequence":"additional","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"},{"name":"Division of Pulmonary and Critical Care Medicine , Minnesota , USA"},{"name":"Departments of Medicine , Minnesota , USA"},{"name":"Neurology , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tyler","family":"Steele","sequence":"additional","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"},{"name":"Division of Pulmonary and Critical Care Medicine , Minnesota , USA"},{"name":"Departments of Medicine , Minnesota , USA"},{"name":"Neurology , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diego Z","family":"Carvalho","sequence":"additional","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"},{"name":"Division of Pulmonary and Critical Care Medicine , Minnesota , USA"},{"name":"Departments of Medicine , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mithri R","family":"Junna","sequence":"additional","affiliation":[{"name":"Neurology , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melissa C","family":"Lipford","sequence":"additional","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"},{"name":"Neurology , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maja","family":"Tippmann Peikert","sequence":"additional","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"},{"name":"Division of Pulmonary and Critical Care Medicine , Minnesota , USA"},{"name":"Departments of Medicine , Minnesota , USA"},{"name":"Neurology , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6379-0765","authenticated-orcid":false,"given":"Laurene","family":"LeClair-Visonneau","sequence":"additional","affiliation":[{"name":"Neurology , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stuart J","family":"McCarter","sequence":"additional","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4153-8187","authenticated-orcid":false,"given":"Bradley F","family":"Boeve","sequence":"additional","affiliation":[{"name":"Neurology , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael H","family":"Silber","sequence":"additional","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"},{"name":"Neurology , Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica","family":"Hirsch","sequence":"additional","affiliation":[{"name":"Biomedical Ethics, Mayo Clinic and Foundation , Rochester, Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard R","family":"Sharp","sequence":"additional","affiliation":[{"name":"Biomedical Ethics, Mayo Clinic and Foundation , Rochester, Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2833-8826","authenticated-orcid":false,"given":"Erik K","family":"St. Louis","sequence":"additional","affiliation":[{"name":"Mayo Center for Sleep Medicine , Minnesota , USA"},{"name":"Division of Pulmonary and Critical Care Medicine , Minnesota , USA"},{"name":"Departments of Medicine , Minnesota , USA"},{"name":"Neurology , Minnesota , USA"},{"name":"Mayo Clinic Health System Southwest Wisconsin , La Crosse, Wisconsin , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2022,10,19]]},"reference":[{"issue":"2","key":"2023011111471685700_CIT0001","doi-asserted-by":"crossref","first-page":"zsx197","DOI":"10.1093\/sleep\/zsx197","article-title":"Prevalence and determinants of rapid eye movement sleep behavior disorder in the general population","volume":"41","author":"Haba-Rubio","year":"2018","journal-title":"Sleep."},{"issue":"2","key":"2023011111471685700_CIT0002","doi-asserted-by":"crossref","first-page":"e89741","DOI":"10.1371\/journal.pone.0089741","article-title":"Neurodegenerative disorder risk in idiopathic REM sleep behavior disorder: study in 174 patients","volume":"9","author":"Iranzo","year":"2014","journal-title":"PLoS One."},{"issue":"6","key":"2023011111471685700_CIT0003","doi-asserted-by":"crossref","first-page":"494","DOI":"10.1212\/WNL.0b013e3181ec7fac","article-title":"REM sleep behavior disorder preceding other aspects of synucleinopathies by up to half a century","volume":"75","author":"Claassen","year":"2010","journal-title":"Neurology."},{"issue":"8","key":"2023011111471685700_CIT0004","doi-asserted-by":"crossref","first-page":"744","DOI":"10.1016\/j.sleep.2012.10.009","article-title":"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","volume":"14","author":"Schenck","year":"2013","journal-title":"Sleep Med."},{"issue":"3","key":"2023011111471685700_CIT0005","doi-asserted-by":"crossref","first-page":"242","DOI":"10.1212\/WNL.0000000000004121","article-title":"Characterization of patients with longstanding idiopathic REM sleep behavior disorder","volume":"89","author":"Iranzo","year":"2017","journal-title":"Neurology."},{"issue":"12","key":"2023011111471685700_CIT0006","doi-asserted-by":"crossref","first-page":"1600","DOI":"10.1002\/mds.26431","article-title":"MDS research criteria for prodromal Parkinson\u2019s disease","volume":"30","author":"Berg","year":"2015","journal-title":"Mov Disord."},{"issue":"8","key":"2023011111471685700_CIT0007","doi-asserted-by":"crossref","first-page":"zsx071","DOI":"10.1093\/sleep\/zsx071","article-title":"Prodromal parkinsonism and neurodegenerative risk stratification in REM sleep behavior disorder","volume":"40","author":"Barber","year":"2017","journal-title":"Sleep"},{"issue":"3","key":"2023011111471685700_CIT0008","doi-asserted-by":"crossref","first-page":"744","DOI":"10.1093\/brain\/awz030","article-title":"Risk and predictors of dementia and parkinsonism in idiopathic REM sleep behaviour disorder: a multicentre study","volume":"142","author":"Postuma","year":"2019","journal-title":"Brain."},{"issue":"11","key":"2023011111471685700_CIT0009","doi-asserted-by":"crossref","first-page":"1723","DOI":"10.1016\/j.mayocp.2017.09.007","article-title":"REM sleep behavior disorder: diagnosis, clinical implications, and future directions","volume":"92","author":"St Louis","year":"2017","journal-title":"Mayo Clin Proc."},{"issue":"2","key":"2023011111471685700_CIT0010","doi-asserted-by":"crossref","first-page":"167","DOI":"10.1016\/j.sleep.2009.03.011","article-title":"REM sleep behavior disorder in 703 sleep-disorder patients: the importance of eliciting a comprehensive sleep history","volume":"11","author":"Frauscher","year":"2010","journal-title":"Sleep Med."},{"issue":"1","key":"2023011111471685700_CIT0011","doi-asserted-by":"crossref","first-page":"121","DOI":"10.5665\/sleep.5332","article-title":"The clinical phenotype of idiopathic rapid eye movement sleep behavior disorder at presentation: a study in 203 consecutive patients","volume":"39","author":"Fern\u00e1ndez-Arcos","year":"2016","journal-title":"Sleep."},{"key":"2023011111471685700_CIT0012","doi-asserted-by":"crossref","first-page":"30","DOI":"10.1016\/j.maturitas.2017.01.008","article-title":"Consent for the diagnosis of preclinical dementia states: a review","volume":"98","author":"Hughes","year":"2017","journal-title":"Maturitas."},{"issue":"1","key":"2023011111471685700_CIT0013","doi-asserted-by":"crossref","first-page":"7","DOI":"10.1093\/bmb\/ldr023","article-title":"The ethics of disclosing genetic diagnosis for Alzheimer\u2019s disease: do we need a new paradigm?","volume":"100","author":"Arribas-Ayllon","year":"2011","journal-title":"Br Med Bull."},{"issue":"3","key":"2023011111471685700_CIT0014","doi-asserted-by":"crossref","first-page":"405","DOI":"10.1111\/j.1532-5415.2007.01600.x","article-title":"Reaction to a dementia diagnosis in individuals with Alzheimer\u2019s disease and mild cognitive impairment","volume":"56","author":"Carpenter","year":"2008","journal-title":"J Am Geriatr Soc."},{"issue":"5","key":"2023011111471685700_CIT0015","doi-asserted-by":"crossref","first-page":"409","DOI":"10.1097\/GIM.0b013e3182076bf1","article-title":"Changes to perceptions of the pros and cons of genetic susceptibility testing after APOE genotyping for Alzheimer disease risk","volume":"13","author":"Christensen","year":"2011","journal-title":"Genet Med."},{"key":"2023011111471685700_CIT0016","doi-asserted-by":"crossref","first-page":"82","DOI":"10.1016\/j.smrv.2016.11.002","article-title":"Idiopathic REM sleep behavior disorder and neurodegenerative risk: To tell or not to tell to the patient? How to minimize the risk?","volume":"36","author":"Arnaldi","year":"2017","journal-title":"Sleep Medicine Reviews"},{"issue":"8","key":"2023011111471685700_CIT0017","doi-asserted-by":"crossref","first-page":"667","DOI":"10.1002\/mdc3.12814","article-title":"Prognostic counseling for patients with idiopathic\/isolated REM sleep behavior disorder: should we tell them what\u2019s coming? Yes","volume":"6","author":"St Louis","year":"2019","journal-title":"Mov Disord Clin Pract"},{"issue":"4","key":"2023011111471685700_CIT0018","doi-asserted-by":"crossref","first-page":"1077","DOI":"10.3233\/JAD-2010-100153","article-title":"Depression in Alzheimer\u2019s disease. Pathophysiology, diagnosis, and treatment","volume":"21","author":"Modrego","year":"2010","journal-title":"J Alzheimers Dis."},{"key":"2023011111471685700_CIT0019","doi-asserted-by":"crossref","first-page":"80","DOI":"10.1016\/j.sleep.2019.03.010","article-title":"Physician and patient determinants of prognostic counseling in idiopathic REM sleep-behavior disorder","volume":"62","author":"Feinstein","year":"2019","journal-title":"Sleep Med."},{"key":"2023011111471685700_CIT0020","article-title":"Specialist approaches to prognostic counseling in isolated REM sleep behavior disorder","author":"Teigen","year":"2020","journal-title":"Sleep Med."},{"key":"2023011111471685700_CIT0021","volume-title":"International classification of sleep disorders","author":"American Academy of Sleep M.","year":"2014"},{"issue":"2","key":"2023011111471685700_CIT0022","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","article-title":"Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support","volume":"42","author":"Harris","year":"2009","journal-title":"J Biomed Inform."},{"issue":"12","key":"2023011111471685700_CIT0023","doi-asserted-by":"crossref","first-page":"A15","DOI":"10.1186\/1471-2105-13-S12-A15","article-title":"Research Electronic Data Capture (REDCap) - planning, collecting and managing data for clinical and translational research","volume":"13","author":"Harris","year":"2012","journal-title":"BMC Bioinf."},{"issue":"2","key":"2023011111471685700_CIT0024","doi-asserted-by":"crossref","first-page":"261","DOI":"10.1007\/BF00912526","article-title":"Intentions to use predictive testing by those at risk for Huntington\u2019s disease: implications for prevention","volume":"16","author":"Meissen","year":"1988","journal-title":"Am J Community Psychol."},{"issue":"3","key":"2023011111471685700_CIT0025","doi-asserted-by":"crossref","first-page":"245","DOI":"10.1056\/NEJMoa0809578","article-title":"Disclosure of APOE genotype for risk of Alzheimer\u2019s disease","volume":"361","author":"Green","year":"2009","journal-title":"N Engl J Med."},{"issue":"1","key":"2023011111471685700_CIT0026","doi-asserted-by":"crossref","first-page":"15056","DOI":"10.1038\/nrdp.2015.56","article-title":"Alzheimer\u2019s disease","volume":"1","author":"Masters","year":"2015","journal-title":"Nat Rev Dis Primers."},{"issue":"6","key":"2023011111471685700_CIT0027","doi-asserted-by":"crossref","first-page":"769","DOI":"10.1007\/s11892-012-0317-0","article-title":"The impact of social support on outcomes in adult patients with type 2 diabetes: a systematic review","volume":"12","author":"Strom","year":"2012","journal-title":"Curr Diab Rep."},{"issue":"2","key":"2023011111471685700_CIT0028","doi-asserted-by":"crossref","first-page":"201","DOI":"10.1097\/YCO.0b013e3282f3ad89","article-title":"Social and emotional support and its implication for health","volume":"21","author":"Reblin","year":"2008","journal-title":"Curr Opin Psychiatry."},{"issue":"3","key":"2023011111471685700_CIT0029","doi-asserted-by":"crossref","first-page":"269","DOI":"10.1037\/0278-6133.7.3.269","article-title":"Psychosocial models of the role of social support in the etiology of physical disease","volume":"7","author":"Cohen","year":"1988","journal-title":"Health Psychol."},{"issue":"4","key":"2023011111471685700_CIT0030","doi-asserted-by":"crossref","first-page":"613","DOI":"10.1111\/1468-0009.00223","article-title":"Trust in physicians and medical institutions: what is it, can it be measured, and does it matter?","volume":"79","author":"Hall","year":"2001","journal-title":"Milbank Q."},{"issue":"5","key":"2023011111471685700_CIT0031","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1108\/14777260610701759","article-title":"Researching trust relations in health care: conceptual and methodological challenges--introduction","volume":"20","author":"Calnan","year":"2006","journal-title":"J Health Organ Manag."},{"issue":"5","key":"2023011111471685700_CIT0032","doi-asserted-by":"crossref","first-page":"e112","DOI":"10.2196\/jmir.4018","article-title":"Low health literacy and evaluation of online health information: a systematic review of the literature","volume":"17","author":"Diviani","year":"2015","journal-title":"J Med Internet Res."}],"container-title":["Sleep"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/sleep\/advance-article-pdf\/doi\/10.1093\/sleep\/zsac244\/47257725\/zsac244.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/sleep\/article-pdf\/46\/1\/zsac244\/48490012\/zsac244.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/sleep\/article-pdf\/46\/1\/zsac244\/48490012\/zsac244.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,1,11]],"date-time":"2023-01-11T15:30:11Z","timestamp":1673451011000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/sleep\/article\/doi\/10.1093\/sleep\/zsac244\/6763392"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,10,19]]},"references-count":32,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2022,10,19]]},"published-print":{"date-parts":[[2023,1,11]]}},"URL":"https:\/\/doi.org\/10.1093\/sleep\/zsac244","relation":{},"ISSN":["0161-8105","1550-9109"],"issn-type":[{"value":"0161-8105","type":"print"},{"value":"1550-9109","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2023,1,1]]},"published":{"date-parts":[[2022,10,19]]},"article-number":"zsac244"}}