{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T06:50:10Z","timestamp":1791355810701,"version":"4.3.1"},"reference-count":25,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,10,6]],"date-time":"2026-10-06T00:00:00Z","timestamp":1791244800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,10,6]],"date-time":"2026-10-06T00:00:00Z","timestamp":1791244800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Muscle and Nerve"],"abstract":"ABSTRACT<\/jats:title>\n \n Introduction\/Aims<\/jats:title>\n Longer term data on ALS patients receiving home palliative care are scarce. We extended follow\u2010up of a 6\u2010month cohort to 12\u2009months to characterize the trajectory of function, symptoms, vital support (noninvasive ventilation [NIV], gastrostomy, and\/or tracheostomy), and advance care planning (ACP).<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n In this prospective, single\u2010center study, 34 consecutive ALS patients in a home palliative care program (SAMOT, Palermo) were assessed at baseline, 2, 4, 6, and 12\u2009months, using Karnofsky, ALS Functional Rating Scale\u2010Revised (ALSFRS\u2010R), Edinburgh Cognitive and Behavioural ALS Screen (ECAS), Edmonton Symptom Assessment Scale (ESAS), dysphagia, vital support, and advanced care planning (ACP).<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n \n Ten patients (29.4%) died over 12\u2009months (70% at home); 26 completed the 12\u2010month assessment. Karnofsky (34.4\u201327.7) and ALSFRS\u2010R (27.1\u201321.7) declined significantly throughout (both\n p<\/jats:italic>\n \u2009<\u20090.0005). Total ESAS rose from 15.7 to 23.7 (\n p<\/jats:italic>\n \u2009<\u20090.0005); anxiety increased significantly between T4 and T12. NIV use rose from 20.6% to 50.0% (\n p<\/jats:italic>\n \u2009=\u20090.014), while tracheostomy remained stable. Documented end\u2010of\u2010life decisions rose to 70.4% at 6\u2009months but plateaued (69.2% at 12\u2009months); no living wills were completed. Cognitive impairment on ECAS was present in about half of patients, unchanged over time. No patient was referred to or admitted to hospice.\n <\/jats:p>\n <\/jats:sec>\n \n Discussion<\/jats:title>\n Extending follow\u2010up beyond 6\u2009months shows continuous functional decline and rising symptom burden, and highlights late\u2010onset anxiety and early\u2010plateauing ACP. Despite progressive needs, this home palliative care model appeared to support most patients at home until death over 1\u2009year, within this single\u2010center, non\u2010comparative cohort.<\/jats:p>\n <\/jats:sec>","DOI":"10.1002\/mus.70429","type":"journal-article","created":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T05:55:59Z","timestamp":1791352559000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["One\u2010Year Clinical Course of Patients With Amyotrophic Lateral Sclerosis Admitted to a Home Palliative Care Program: An Extension Study"],"prefix":"10.1002","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9859-6487","authenticated-orcid":false,"given":"Sebastiano","family":"Mercadante","sequence":"first","affiliation":[{"name":"Main Regional Center of Pain Relief and Supportive\/Palliative Care, La Maddalena Cancer Center Palermo Italy"},{"name":"Regional Home Care Program, SAMOT Palermo Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antonino","family":"Petronaci","sequence":"additional","affiliation":[{"name":"Regional Home Care Program, SAMOT Palermo Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"Neuro Palliative Care Team of SAMOT","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,10,6]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"crossref","first-page":"1918","DOI":"10.1111\/ene.14393","article-title":"Amyotrophic Lateral Sclerosis: A Clinical Review","volume":"27","author":"Masrori P.","year":"2020","journal-title":"European Journal of Neurology"},{"key":"e_1_2_11_3_1","doi-asserted-by":"crossref","first-page":"e485","DOI":"10.1016\/j.jpainsymman.2023.06.029","article-title":"Palliative Care in Amyotrophic Lateral Sclerosis","volume":"66","author":"Mercadante S.","year":"2023","journal-title":"Journal of Pain and Symptom Management"},{"key":"e_1_2_11_4_1","doi-asserted-by":"crossref","DOI":"10.1111\/ene.16264","article-title":"European Academy of Neurology (EAN) Guideline on the Management of Amyotrophic Lateral Sclerosis in Collaboration With European Reference Network for Neuromuscular Diseases (ERN EURO\u2010NMD)","volume":"31","author":"Van Damme P.","year":"2024","journal-title":"European Journal of Neurology"},{"key":"e_1_2_11_5_1","doi-asserted-by":"crossref","first-page":"483","DOI":"10.1177\/10499091241266985","article-title":"Characteristics of Patients With Amyotrophic Lateral Sclerosis Followed by a Home Palliative Care Team","volume":"42","author":"Mercadante S.","year":"2025","journal-title":"American Journal of Hospice & Palliative Care"},{"issue":"4","key":"e_1_2_11_6_1","doi-asserted-by":"crossref","first-page":"560","DOI":"10.1016\/j.jpainsymman.2025.12.026","article-title":"Clinical Changes in Patients With Amyotrophic Lateral Sclerosis Admitted to a Home Care Program","volume":"71","author":"Mercadante S.","year":"2026","journal-title":"Journal of Pain and Symptom Management"},{"key":"e_1_2_11_7_1","doi-asserted-by":"crossref","first-page":"293","DOI":"10.1080\/146608200300079536","article-title":"El Escorial Revisited: Revised Criteria for the Diagnosis of Amyotrophic Lateral Sclerosis","volume":"1","author":"Brooks B. R.","year":"2000","journal-title":"Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders"},{"key":"e_1_2_11_8_1","doi-asserted-by":"crossref","first-page":"9","DOI":"10.3109\/21678421.2013.805784","article-title":"Screening for Cognition and Behaviour Changes in ALS","volume":"15","author":"Abrahams S.","year":"2014","journal-title":"Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration"},{"key":"e_1_2_11_9_1","first-page":"191","volume-title":"Evaluation of Chemotherapeutic Agents","author":"Karnofsky D. A.","year":"1949"},{"key":"e_1_2_11_10_1","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1016\/S0022-510X(99)00210-5","article-title":"The ALSFRS\u2010R: A Revised ALS Functional Rating Scale That Incorporates Assessments of Respiratory Function","volume":"169","author":"Cedarbaum J. M.","year":"1999","journal-title":"Journal of the Neurological Sciences"},{"key":"e_1_2_11_11_1","doi-asserted-by":"crossref","first-page":"630","DOI":"10.1016\/j.jpainsymman.2016.10.370","article-title":"The Edmonton Symptom Assessment System 25\u2009Years Later: Past, Present, and Future Developments","volume":"53","author":"Hui D.","year":"2017","journal-title":"Journal of Pain and Symptom Management"},{"key":"e_1_2_11_12_1","doi-asserted-by":"crossref","first-page":"937","DOI":"10.1002\/mus.28218","article-title":"Homecare Amyotrophic Lateral Sclerosis (ALS): A Multidisciplinary, Home\u2010Based Model of Care for Patients With ALS and Their Caregivers","volume":"70","author":"Bublitz S. K.","year":"2024","journal-title":"Muscle & Nerve"},{"issue":"1","key":"e_1_2_11_13_1","doi-asserted-by":"crossref","first-page":"30","DOI":"10.1080\/21678421.2024.2443985","article-title":"Natural History of the Revised ALS Functional Rating Scale and Its Association With Survival: The PRECISION\u2010ALS Extant Study","volume":"26","author":"Eijk R. P. A.","year":"2025","journal-title":"Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration"},{"issue":"9","key":"e_1_2_11_14_1","doi-asserted-by":"crossref","first-page":"1402","DOI":"10.1177\/02692163231191545","article-title":"Motor Neurone Disease: A Point\u2010Prevalence Study of Patient Reported Symptom Prevalence, Severity and Palliative Care Needs","volume":"37","author":"Runacres F.","year":"2023","journal-title":"Palliative Medicine"},{"key":"e_1_2_11_15_1","doi-asserted-by":"crossref","first-page":"3027","DOI":"10.1002\/cncr.29437","article-title":"Minimal Clinically Important Differences in the Edmonton Symptom Assessment Scale in Cancer Patients: A Prospective, Multicenter Study","volume":"121","author":"Hui D.","year":"2015","journal-title":"Cancer"},{"key":"e_1_2_11_16_1","doi-asserted-by":"crossref","first-page":"435","DOI":"10.1016\/S1474-4422(14)70221-2","article-title":"End\u2010of\u2010Life Management in Patients With Amyotrophic Lateral Sclerosis","volume":"14","author":"Connolly S.","year":"2015","journal-title":"Lancet Neurology"},{"key":"e_1_2_11_17_1","doi-asserted-by":"crossref","first-page":"140","DOI":"10.1016\/S1474-4422(05)70326-4","article-title":"Effects of Non\u2010Invasive Ventilation on Survival and Quality of Life in Patients With Amyotrophic Lateral Sclerosis: A Randomized Controlled Trial","volume":"5","author":"Bourke S. C.","year":"2006","journal-title":"Lancet Neurology"},{"key":"e_1_2_11_18_1","doi-asserted-by":"crossref","DOI":"10.1183\/13993003.00261-2019","article-title":"The Optimisation of Noninvasive Ventilation in Amyotrophic Lateral Sclerosis: A Systematic Review","volume":"54","author":"O'Brien D.","year":"2019","journal-title":"European Respiratory Journal"},{"key":"e_1_2_11_19_1","doi-asserted-by":"crossref","first-page":"62","DOI":"10.3109\/21678421.2013.837929","article-title":"Survival in ALS With Home Mechanical Ventilation Non\u2010Invasively and Invasively: A 15\u2010Year Cohort Study in West Denmark","volume":"15","author":"Dreyer P.","year":"2014","journal-title":"Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration"},{"key":"e_1_2_11_20_1","doi-asserted-by":"crossref","first-page":"1141","DOI":"10.1136\/jnnp.2009.175984","article-title":"Tracheostomy in Amyotrophic Lateral Sclerosis: A 10\u2010Year Population\u2010Based Study in Italy","volume":"81","author":"Chio A.","year":"2010","journal-title":"Journal of Neurology, Neurosurgery, and Psychiatry"},{"key":"e_1_2_11_21_1","doi-asserted-by":"crossref","first-page":"249","DOI":"10.1378\/chest.110.1.249","article-title":"Patients With Amyotrophic Lateral Sclerosis Receiving Long\u2010Term Mechanical Ventilation: Advance Care Planning and Outcomes","volume":"110","author":"Moss A.","year":"1996","journal-title":"Chest"},{"key":"e_1_2_11_22_1","doi-asserted-by":"crossref","DOI":"10.1186\/s12904-019-0433-6","article-title":"Advance Care Planning in Progressive Neurological Diseases: Lessons From ALS","volume":"18","author":"Seeber A. A.","year":"2019","journal-title":"BMC Palliative Care"},{"key":"e_1_2_11_23_1","doi-asserted-by":"crossref","first-page":"572","DOI":"10.1177\/02692163241242320","article-title":"Experiences With Advance Care Planning in Amyotrophic Lateral Sclerosis: Qualitative Longitudinal Study With People With Amyotrophic Lateral Sclerosis and Their Family Carers","volume":"38","author":"Vandenbogaerde I.","year":"2024","journal-title":"Palliative Medicine"},{"key":"e_1_2_11_24_1","doi-asserted-by":"crossref","first-page":"187","DOI":"10.1002\/mus.27462","article-title":"Documentation of Advance Care Planning Forms in Patients With Amyotrophic Lateral Sclerosis","volume":"65","author":"Takacs S.","year":"2022","journal-title":"Muscle & Nerve"},{"key":"e_1_2_11_25_1","doi-asserted-by":"crossref","first-page":"209","DOI":"10.1177\/0269216320967280","article-title":"End\u2010of\u2010Life Care After the Legal Introduction of Advance Directives: A Qualitative Study Involving Healthcare Professionals and Family Caregivers of Patients With Amyotrophic Lateral Sclerosis","volume":"35","author":"Cipolletta S.","year":"2021","journal-title":"Palliative Medicine"},{"issue":"6","key":"e_1_2_11_26_1","doi-asserted-by":"crossref","first-page":"679","DOI":"10.1016\/j.jpainsymman.2025.08.046","article-title":"Goal\u2010Concordant Care in People With Amyotrophic Lateral Sclerosis Receiving Palliative Care","volume":"70","author":"Bonares M. J.","year":"2025","journal-title":"Journal of Pain and Symptom Management"}],"container-title":["Muscle & Nerve"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mus.70429","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/mus.70429","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mus.70429","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T05:56:03Z","timestamp":1791352563000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/mus.70429"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,10,6]]},"references-count":25,"alternative-id":["10.1002\/mus.70429"],"URL":"https:\/\/doi.org\/10.1002\/mus.70429","archive":["Portico"],"relation":{},"ISSN":["0148-639X","1097-4598"],"issn-type":[{"value":"0148-639X","type":"print"},{"value":"1097-4598","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,10,6]]},"assertion":[{"value":"2026-07-24","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-10-01","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-10-06","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"mus.70429"}}