{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,25]],"date-time":"2026-08-25T23:11:32Z","timestamp":1787699492749,"version":"build-2784847793"},"reference-count":32,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2025,5,23]],"date-time":"2025-05-23T00:00:00Z","timestamp":1747958400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["1K23AG086669\u201001"],"award-info":[{"award-number":["1K23AG086669\u201001"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["movementdisorders.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Movement Disorders"],"published-print":{"date-parts":[[2025,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>In persons with Parkinson's disease (PD) and related disorders (PDRD), rates of end\u2010of\u2010life (EoL) hospitalization are greatest, and rates of hospice utilization lowest, among men and persons of color. Reasons for these differences are unknown.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objective<\/jats:title><jats:p>The aim of this study was to determine whether attitudes toward EoL care differ by sex and race\/ethnicity in persons with PDRD.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>In this concurrent mixed\u2010methods study, participants with PDRD were recruited from two movement disorders centers. Attitudes toward EoL care were determined using a modified Attitudes of Older People to End\u2010of\u2010Life Issues questionnaire and focus groups. Questionnaire responses were compared using Wilcoxon rank\u2010sum and multinomial logistic regression models, adjusting for sociodemographic factors. Focus group transcripts were analyzed using a constant comparative analytic framework.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>We recruited 255 participants with PDRD (45% female, 25% non\u2010White). There were no differences in questionnaire responses between participants with PD and atypical parkinsonism. In adjusted models, women with PDRD were more likely than men to prefer religious\/spiritual support at the end of life. Compared with White participants with PDRD, non\u2010White participants were more likely to consider EoL hospitalization, less likely to consider medical aid in dying, and less familiar with palliative care. In four focus groups involving 14 questionnaire respondents, contributors to EoL decision\u2010making included medical knowledge\/information, personal experiences, family dynamics, religion\/spirituality, and resources\/cost.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>EoL care preferences differ by sex and race\/ethnicity in persons with PDRD. These preferences are influenced by multiple factors and may contribute to differential EoL outcomes, emphasizing the need for individualized, culturally competent EoL care. \u00a9 2025 The Author(s). <jats:italic>Movement Disorders<\/jats:italic> published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mds.30240","type":"journal-article","created":{"date-parts":[[2025,5,23]],"date-time":"2025-05-23T23:54:48Z","timestamp":1748044488000},"page":"1951-1964","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Sex and Racial\/Ethnic Differences in End\u2010of\u2010Life Care Preferences in Persons with Parkinson's Disease and Related Disorders"],"prefix":"10.1002","volume":"40","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8130-2809","authenticated-orcid":false,"given":"Whitley W.","family":"Aamodt","sequence":"first","affiliation":[{"name":"Department of Neurology University of Pennsylvania  Philadelphia PA USA"},{"name":"Translational Center of Excellence for Neuroepidemiology and Neurology Outcomes Research, Perelman School of Medicine, University of Pennsylvania  Philadelphia PA USA"},{"name":"Leonard Davis Institute of Health Economics, University of Pennsylvania  Philadelphia PA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lynn","family":"Eickholt","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Pennsylvania  Philadelphia PA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David G.","family":"Coughlin","sequence":"additional","affiliation":[{"name":"Department of Neurosciences University of California San Diego  San Diego CA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lisa","family":"Solomon","sequence":"additional","affiliation":[{"name":"Department of Neurosciences University of California San Diego  San Diego CA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katharine A.","family":"Rendle","sequence":"additional","affiliation":[{"name":"Leonard Davis Institute of Health Economics, University of Pennsylvania  Philadelphia PA USA"},{"name":"Department of Family Medicine and Community Health University of Pennsylvania  Philadelphia PA USA"},{"name":"Department of Biostatistics, Epidemiology, and Informatics University of Pennsylvania  Philadelphia PA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carly","family":"Marshall","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Pennsylvania  Philadelphia PA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joaquin A.","family":"Vizcarra","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Pennsylvania  Philadelphia PA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nabila","family":"Dahodwala","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Pennsylvania  Philadelphia PA USA"},{"name":"Translational Center of Excellence for Neuroepidemiology and Neurology Outcomes Research, Perelman School of Medicine, University of Pennsylvania  Philadelphia PA USA"},{"name":"Leonard Davis Institute of Health Economics, University of Pennsylvania  Philadelphia PA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,5,23]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000012826"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.29417"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1080\/07481180126202"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2020.14639"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216317705099"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40120-024-00687-6"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.22557"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1002\/ana.21774"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000200171"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2019.14466"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2019.14471"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2015.17408"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2019.7650"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049909120966585"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/mdc3.12313"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.28633"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1191\/0269216305pm1036oa"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10488-013-0528-y"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10823-014-9233-x"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.12903"},{"key":"e_1_2_9_22_1","unstructured":"U.S. Census Bureau U.S. Department of Commerce.Income in the Past 12 Months (in 2023 Inflation\u2010Adjusted Dollars); American Community Survey ACS 5\u2010Year Estimates Subject Tables Table S19012023.https:\/\/data.census.gov\/table\/ACSST5Y2023.S1901?g=010XX00US$8600000Accessed on March 25 2025."},{"key":"e_1_2_9_23_1","unstructured":"FryR.Are You in the U.S. Middle Class? Try Our Income Calculator; Pew Research Center2024.https:\/\/www.pewresearch.org\/Short-Reads\/2024\/09\/16\/Are-You-in-the-American-Middle-Class\/Accessed on April 2 2025."},{"key":"e_1_2_9_24_1","volume-title":"Focus Groups: A Practical Guide for Applied Research","author":"Krueger RA","year":"2009"},{"key":"e_1_2_9_25_1","doi-asserted-by":"publisher","DOI":"10.21037\/apm.2019.09.13"},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.1002\/mdc3.12702"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.21037\/apm.2019.11.24"},{"key":"e_1_2_9_28_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-021-06226-5"},{"key":"e_1_2_9_29_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2018.03.014"},{"key":"e_1_2_9_30_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1532-5415.2008.01919.x"},{"key":"e_1_2_9_31_1","first-page":"149","volume-title":"Religion, Spirituality and the Social Sciences: Challenging Marginalisation","author":"Francis LJ","year":"2008"},{"key":"e_1_2_9_32_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.parkreldis.2008.06.005"},{"key":"e_1_2_9_33_1","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000200138"}],"container-title":["Movement Disorders"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/movementdisorders.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mds.30240","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,1]],"date-time":"2025-10-01T11:35:07Z","timestamp":1759318507000},"score":1,"resource":{"primary":{"URL":"https:\/\/movementdisorders.onlinelibrary.wiley.com\/doi\/10.1002\/mds.30240"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,5,23]]},"references-count":32,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2025,9]]}},"alternative-id":["10.1002\/mds.30240"],"URL":"https:\/\/doi.org\/10.1002\/mds.30240","archive":["Portico"],"relation":{},"ISSN":["0885-3185","1531-8257"],"issn-type":[{"value":"0885-3185","type":"print"},{"value":"1531-8257","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,5,23]]},"assertion":[{"value":"2025-02-21","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-05-06","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-05-23","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}