{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,31]],"date-time":"2026-08-31T18:37:45Z","timestamp":1788201465386,"version":"build-2803163510"},"reference-count":34,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2025,8,19]],"date-time":"2025-08-19T00:00:00Z","timestamp":1755561600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000971","name":"ALS Association","doi-asserted-by":"publisher","award":["A142921"],"award-info":[{"award-number":["A142921"]}],"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":[[2025,11]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction\/Aims<\/jats:title>\n                    <jats:p>Specialty palliative care (SPC) aims to optimize quality of life for people with life\u2010limiting illnesses. Previous studies support benefits of SPC for people with amyotrophic lateral sclerosis (pALS) and their caregivers; however, few studies have compared patient and caregiver experiences with ALS care and SPC.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>An online survey assessing satisfaction with care was distributed to pALS and caregivers who had received SPC. Those who completed the survey were also invited to participate in a semi\u2010structured interview.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Thirty\u2010four people (10 pALS, 25 caregivers) from 26 ALS clinics in 20 states completed the survey. Sixteen also provided a qualitative interview. Respondents were most commonly satisfied with their ALS team's ability to answer questions (81%), counsel them regarding ALS medications (78%), and manage motor symptoms (77%). Respondents were least commonly satisfied with their ALS team's ability to manage mood (50%), address spiritual\/existential concerns (48%), and help them find in\u2010home care providers (38%). SPC was initiated an average of 14.6\u2009months after ALS diagnosis. Respondents were most commonly satisfied with their SPC team's responsiveness to time\u2010sensitive needs between scheduled visits (82%) and management of mood (80%) and non\u2010pain physical symptoms (73%). Respondents were least commonly satisfied with their SPC team's ability to help with equipment needs (52%), make decisions about procedures (50%), and find in\u2010home caregivers (46%). Interviews highlighted the emotional support and care coordination that SPC teams provide.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>pALS and caregivers identified distinct and complementary strengths of ALS and SPC teams, suggesting that collaboration between teams may provide the most comprehensive care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/mus.70006","type":"journal-article","created":{"date-parts":[[2025,8,19]],"date-time":"2025-08-19T09:20:47Z","timestamp":1755595247000},"page":"1081-1090","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Patients' and Caregivers' Perceptions of Specialty Palliative Care for Amyotrophic Lateral Sclerosis: A Multicenter Evaluation"],"prefix":"10.1002","volume":"72","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7834-2279","authenticated-orcid":false,"given":"Ambereen K.","family":"Mehta","sequence":"first","affiliation":[{"name":"Department of Medicine Johns Hopkins School of Medicine  Baltimore Maryland USA"},{"name":"Department of Neurology Johns Hopkins School of Medicine  Baltimore Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gayle","family":"Kojimoto","sequence":"additional","affiliation":[{"name":"Department of Neurology Johns Hopkins School of Medicine  Baltimore Maryland 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"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6863-3205","authenticated-orcid":false,"given":"Kara E.","family":"Bischoff","sequence":"additional","affiliation":[{"name":"Division of Palliative Medicine, Department of Medicine University of California, San Francisco  San Francisco California 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