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Methods: Researchers partnered with national organizations to recruit pALS to participate in a one-time survey comprising items from validated instruments (eg, the ALS Specific Quality of Life Instrument-Revised) and researcher-generated measures. Data were analyzed using logistic and linear regression. Results: Among pALS (n = 112), many respondents indicated they had discussed their wishes for end-of-life care with family or friends, shared their wishes with providers, and documented their wishes in writing (79.5%, 49.1%, and 63.4%, respectively). Mean (M) quality of life scores were moderate (M \u2248 6 of 10). Illness stage was associated with documentation of end-of-life care wishes but not with having discussed these wishes with others or with overall quality of life. Reported emotional intimacy received was comparable to that desired (difference = .01 of 10); however, a greater desire for physical intimacy relative to that received was indicated (difference = 1.75 of 10). Discussion: Interdisciplinary palliative care teams may enhance ALS care by promoting advance care planning behaviors (particularly discussing one\u2019s wishes with healthcare providers), providing interventions to improve quality of life, and supporting pALS in navigating challenges related to physical intimacy.<\/jats:p>","DOI":"10.1177\/10499091241248653","type":"journal-article","created":{"date-parts":[[2024,4,24]],"date-time":"2024-04-24T14:55:14Z","timestamp":1713970514000},"page":"326-333","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":3,"title":["Identifying the Unmet Needs of People Living With Amyotrophic Lateral Sclerosis: A National Survey to Inform Interdisciplinary Palliative Care"],"prefix":"10.1177","volume":"42","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1100-9524","authenticated-orcid":false,"given":"Karla T.","family":"Washington","sequence":"first","affiliation":[{"name":"Division of Palliative Medicine, Department of Medicine, School of Medicine, Washington University in St. Louis, St. Louis, MO, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlton A.","family":"Mechling","sequence":"additional","affiliation":[{"name":"Program in Occupational Therapy, School of Medicine, Washington University in St. Louis, St. Louis, MO, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kyle A.","family":"Pitzer","sequence":"additional","affiliation":[{"name":"Division of Palliative Medicine, Department of Medicine, School of Medicine, Washington University in St. Louis, St. Louis, MO, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Samuel","family":"Maiser","sequence":"additional","affiliation":[{"name":"Department of Neurology and Internal Medicine, Hennepin Healthcare, Minneapolis, MN, USA"},{"name":"Department of Neurology and Internal Medicine, University of Minnesota Medical School, Minneapolis, MN, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ambereen K.","family":"Mehta","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Johns Hopkins School of Medicine, Baltimore, MD, USA"},{"name":"Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2024,4,24]]},"reference":[{"key":"bibr1-10499091241248653","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMra1603471"},{"key":"bibr2-10499091241248653","doi-asserted-by":"publisher","DOI":"10.1177\/1049909119834493"},{"key":"bibr3-10499091241248653","doi-asserted-by":"publisher","DOI":"10.1177\/0825859719895827"},{"key":"bibr4-10499091241248653","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2023.06.029"},{"key":"bibr5-10499091241248653","doi-asserted-by":"publisher","DOI":"10.1177\/10499091211049386"},{"key":"bibr6-10499091241248653","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2020.1760889"},{"key":"bibr7-10499091241248653","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2021.03.008"},{"key":"bibr8-10499091241248653","volume-title":"About Palliative Care","author":"Center to Advance Palliative Care","year":"2023"},{"key":"bibr9-10499091241248653","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000001124"},{"key":"bibr10-10499091241248653","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2010.232637"},{"key":"bibr11-10499091241248653","doi-asserted-by":"publisher","DOI":"10.1002\/mus.27239"},{"key":"bibr12-10499091241248653","doi-asserted-by":"publisher","DOI":"10.1002\/mus.27194"},{"key":"bibr13-10499091241248653","doi-asserted-by":"publisher","DOI":"10.1177\/0269215517709890"},{"key":"bibr14-10499091241248653","volume-title":"Usability Testing for Survey Research","author":"Geisen E","year":"2017"},{"key":"bibr15-10499091241248653","volume-title":"Our Mission","author":"Northeast Amyotrophic Lateral Sclerosis Consortium","year":"2023"},{"key":"bibr16-10499091241248653","unstructured":"I AM ALS. https:\/\/www.iamals.org\/. 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