{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,31]],"date-time":"2026-08-31T18:37:43Z","timestamp":1788201463048,"version":"build-2803163510"},"reference-count":47,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2025,6,12]],"date-time":"2025-06-12T00:00:00Z","timestamp":1749686400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000971","name":"ALS Association","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000971","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Muscle and Nerve"],"published-print":{"date-parts":[[2025,9]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Introduction\/Aims<\/jats:title><jats:p>Little is known about the state of palliative care (PC) for people with ALS (pALS) in the U.S. We aimed to examine current practice regarding PC for pALS and how it can be improved.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>ALS and PC clinicians completed surveys about: (1) strengths and limitations of PC for pALS provided by ALS and PC teams, (2) reasons for and barriers to referring to specialty PC, and (3) how PC could be improved.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>One hundred forty\u2010one ALS clinicians from 72 institutions and 242 PC clinicians from 96 institutions in 30 states completed surveys. Half of ALS clinicians reported they are able to manage patients' pain (55%) and mood symptoms (52%) \u201cvery well.\u201d Fewer reported managing care partner needs (43%) and spiritual\/existential distress (29%) \u201cvery well.\u201d Fifty\u2010eight percent of pALS are referred to outpatient PC and 69% to hospice at some point in the illness. Barriers to referring include that PC programs are not sufficiently available to pALS. ALS clinicians generally felt satisfied with PC teams' care, but PC clinicians were less confident managing motor symptoms (51% confident) and helping care partners understand how to provide care (51%) and use equipment (25%). Most clinicians felt the quality of PC provided by ALS (77%) and PC (90%) teams is good\/excellent. However, qualitative comments highlighted that both ALS and PC clinicians have knowledge gaps, and collaboration between ALS and PC clinicians should increase.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>Clinician education, expansion of PC services, strengthened collaboration, and further research about PC for pALS are needed.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mus.28458","type":"journal-article","created":{"date-parts":[[2025,6,12]],"date-time":"2025-06-12T05:18:39Z","timestamp":1749705519000},"page":"455-463","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Strengths and Opportunities: Clinicians' Perspectives on Palliative Care for Amyotrophic Lateral Sclerosis (<scp>ALS<\/scp>) in the United States"],"prefix":"10.1002","volume":"72","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6863-3205","authenticated-orcid":false,"given":"Kara E.","family":"Bischoff","sequence":"first","affiliation":[{"name":"Division of Palliative Medicine, Department of Medicine University of California, San Francisco  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gayle","family":"Kojimoto","sequence":"additional","affiliation":[{"name":"Division of Palliative Medicine, Department of Medicine University of California, San Francisco  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David L.","family":"O'Riordan","sequence":"additional","affiliation":[{"name":"Division of Palliative Medicine, Department of Medicine University of California, San Francisco  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0696-7955","authenticated-orcid":false,"given":"Yaowaree L.","family":"Leavell","sequence":"additional","affiliation":[{"name":"Department of Neurology Oregon Health and Sciences University  Portland Oregon USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Samuel","family":"Maiser","sequence":"additional","affiliation":[{"name":"Department of Neurology Hennepin Healthcare  Minneapolis Minnesota USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Astrid","family":"Grouls","sequence":"additional","affiliation":[{"name":"Division of Geriatrics and Palliative Medicine, Department of Medicine Baylor College of Medicine  Houston Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexander K.","family":"Smith","sequence":"additional","affiliation":[{"name":"Division of Geriatrics, Department of Medicine University of California, San Francisco  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Steven Z.","family":"Pantilat","sequence":"additional","affiliation":[{"name":"Division of Palliative Medicine, Department of Medicine University of California, San Francisco  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Benzi M.","family":"Kluger","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Rochester  Rochester New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ambereen K.","family":"Mehta","sequence":"additional","affiliation":[{"name":"Department of Medicine and Neurology Johns Hopkins Medicine  Baltimore Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,6,12]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10072\u2010020\u201005011\u20102"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474\u20104422(17)30115\u20101"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.22305"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2020.1760889"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1177\/082585970602200305"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/s0022\u2010510x(03)00003\u20100"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1007\/s004150070069"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216311416036"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216320908775"},{"key":"e_1_2_10_11_1","unstructured":"About Palliative Care \u201cAbout Palliative Care \u201daccessed September 7 2023 https:\/\/www.capc.org\/about\/palliative\u2010care\/."},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp1215620"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1000678"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140\u20106736(13)62416\u20102"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamaneurol.2019.4992"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2017.05.030"},{"issue":"2","key":"e_1_2_10_17_1","first-page":"8","article-title":"Effects of a Program for Coordinated Care of Advanced Illness on Patients, Surrogates, and Healthcare Costs: A Randomized Trial","volume":"12","author":"Engelhardt J. B.","year":"2006","journal-title":"American Journal of Managed Care"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2003.03.002"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare\u20102014\u2010000788"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000001124"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.26607"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.27194"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1177\/0825859719895827"},{"key":"e_1_2_10_24_1","doi-asserted-by":"publisher","DOI":"10.1177\/10499091211049386"},{"key":"e_1_2_10_25_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468\u20101331.2005.01351.x"},{"key":"e_1_2_10_26_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2010.232637"},{"key":"e_1_2_10_27_1","doi-asserted-by":"publisher","DOI":"10.1080\/146608201753275517"},{"key":"e_1_2_10_28_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.27203"},{"key":"e_1_2_10_29_1","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000200278"},{"key":"e_1_2_10_30_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare\u20102020\u2010002322"},{"key":"e_1_2_10_31_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2022.2136993"},{"key":"e_1_2_10_32_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13012\u2010019\u20100853\u2010y"},{"key":"e_1_2_10_33_1","doi-asserted-by":"publisher","DOI":"10.1177\/104973230201200611"},{"key":"e_1_2_10_34_1","doi-asserted-by":"publisher","DOI":"10.46743\/2160\u20103715\/2021.5013"},{"key":"e_1_2_10_35_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732320921835"},{"key":"e_1_2_10_36_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.psychres.2019.112516"},{"key":"e_1_2_10_37_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13012\u2010021\u201001111\u20105"},{"key":"e_1_2_10_38_1","doi-asserted-by":"publisher","DOI":"10.3109\/17482968.2011.607500"},{"key":"e_1_2_10_39_1","doi-asserted-by":"publisher","DOI":"10.1080\/17482960601164532"},{"key":"e_1_2_10_40_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000003335"},{"key":"e_1_2_10_41_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000010831"},{"key":"e_1_2_10_42_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.28556"},{"key":"e_1_2_10_43_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2020.15061"},{"key":"e_1_2_10_44_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.26203"},{"key":"e_1_2_10_45_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2020.14205"},{"key":"e_1_2_10_46_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000005916"},{"key":"e_1_2_10_47_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474\u20104422(23)00129\u20101"},{"key":"e_1_2_10_48_1","unstructured":"Workforce Statistics \u201cWorkforce Statistics \u201daccessed May 2 2025 https:\/\/aahpm.org\/career\u2010resources\/workforce\u2010study\/."}],"container-title":["Muscle &amp; Nerve"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mus.28458","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,8,11]],"date-time":"2025-08-11T14:14:23Z","timestamp":1754921663000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/mus.28458"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6,12]]},"references-count":47,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2025,9]]}},"alternative-id":["10.1002\/mus.28458"],"URL":"https:\/\/doi.org\/10.1002\/mus.28458","archive":["Portico"],"relation":{},"ISSN":["0148-639X","1097-4598"],"issn-type":[{"value":"0148-639X","type":"print"},{"value":"1097-4598","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,6,12]]},"assertion":[{"value":"2025-02-26","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-06-03","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-06-12","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}