{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,19]],"date-time":"2026-10-19T13:43:41Z","timestamp":1792417421159,"version":"4.4.0"},"reference-count":32,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"3","license":[{"start":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T00:00:00Z","timestamp":1777593600000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0"}],"content-domain":{"domain":["lww.com","ovid.com"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2026,5]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background and Objectives:<\/jats:title>\n                    <jats:p>Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disorder with a high symptom burden and limited survival. Little is known about the terminal phase experiences, symptom prevalence, and end-of-life care patterns of people with ALS (PALS) in India. This study aimed to assess terminal events and caregiver-reported outcomes in PALS to identify gaps in ALS care delivery in India.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>A cross-sectional telephonic survey was conducted among bereaved caregivers of PALS enrolled in the Neuropalliative and Supportive Care project between December 2021 and May 2024. A structured, validated questionnaire was used to collect data on demographics, terminal-phase symptoms, medical interventions, and the nature of death as perceived by primary caregivers. Descriptive statistics and appropriate statistical analyses were performed.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>\n                      A total of 130 caregivers participated in the survey; the majority (57.7%) were sons or daughters. Among the 130 PALS, 76 (58.5%) were men; 56.2% had limb onset and 43.8% had bulbar onset. The mean age at death was 53.5 \u00b1 11.4 years. Most patients (57.7%) died at home, and 29.2% experienced sudden death. Patients who died in the hospital were more likely to be on invasive mechanical ventilation (\n                      <jats:italic toggle=\"yes\">P<\/jats:italic>\n                      &lt; 0.001). The most common terminal symptoms were breathlessness (79.2%), excessive oral secretions (54.6%), followed by anxiety or restlessness (44.6%). Only 20% received bilevel positive airway pressure, and 25.4% were on percutaneous endoscopic gastrostomy. A significant association was found between bulbar onset and assisted feeding (\n                      <jats:italic toggle=\"yes\">P<\/jats:italic>\n                      = 0.002).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>This study highlights the need for proactive, community-integrated palliative care services and emphasizes the urgency of early intervention and caregiver support to improve end-of-life experiences in PALS in India.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.4103\/aian.aian_1234_25","type":"journal-article","created":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T05:00:08Z","timestamp":1780290008000},"page":"386-391","update-policy":"https:\/\/doi.org\/10.1097\/lww.0000000000001000","source":"Crossref","is-referenced-by-count":0,"title":["The Unfinished Breath: Caregiver Perceptions of Terminal Events and Gaps in Amyotrophic Lateral Sclerosis Care in India"],"prefix":"10.4103","volume":"29","author":[{"given":"Darshan","family":"Chikktimmegowda","sequence":"first","affiliation":[{"name":"Department of Neurology, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Muddasu Suhasini","family":"Keerthipriya","sequence":"additional","affiliation":[{"name":"Department of Neurology, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Seena","family":"Vengalil","sequence":"additional","affiliation":[{"name":"Department of Neurology, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Saraswati","family":"Nashi","sequence":"additional","affiliation":[{"name":"Department of Neurology, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dipti","family":"Baskar","sequence":"additional","affiliation":[{"name":"Department of Neurology, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J Jobi","family":"Mol","sequence":"additional","affiliation":[{"name":"Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Soja","family":"Joseph","sequence":"additional","affiliation":[{"name":"Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"SY","family":"Aishwarya","sequence":"additional","affiliation":[{"name":"Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"PB","family":"Binesha","sequence":"additional","affiliation":[{"name":"Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"B Dinesh","family":"Kumar","sequence":"additional","affiliation":[{"name":"Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H","family":"Chandrika","sequence":"additional","affiliation":[{"name":"Department of Neurology, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mugdha","family":"Mehta","sequence":"additional","affiliation":[{"name":"Department of Neurology, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ajmal","family":"Roshan","sequence":"additional","affiliation":[{"name":"Department of Neurology, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yamini Keshavaprasad","family":"Belur","sequence":"additional","affiliation":[{"name":"Department of Speech Pathology and Audiology, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Atchayaram","family":"Nalini","sequence":"additional","affiliation":[{"name":"Department of Neurology, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Priya Treesa","family":"Thomas","sequence":"additional","affiliation":[{"name":"Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"276","published-online":{"date-parts":[[2026,5,29]]},"reference":[{"key":"R1-20261019","doi-asserted-by":"crossref","first-page":"118","DOI":"10.1159\/000351153","article-title":"Global epidemiology of amyotrophic lateral sclerosis: A systematic review of the published literature","volume":"41","author":"Chi\u00f2","year":"2013","journal-title":"Neuroepidemiology"},{"key":"R2-20261019","doi-asserted-by":"crossref","first-page":"813","DOI":"10.1212\/01.WNL.0000049472.47709.3B","article-title":"Prognosis in amyotrophic lateral sclerosis: A population-based study","volume":"60","author":"del 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Degener"},{"key":"R16-20261019","doi-asserted-by":"crossref","first-page":"46","DOI":"10.4103\/0028-3886.198177","article-title":"An insight into death wish among patients with amyotrophic lateral sclerosis in India using \u201cWish-to-Die Questionnaire\u201c","volume":"65","author":"Gourie-Devi","year":"2017","journal-title":"Neurol India"},{"key":"R17-20261019","doi-asserted-by":"crossref","first-page":"217","DOI":"10.1111\/j.1600-0404.2009.01290.x","article-title":"Causes and place of death in Italian patients with amyotrophic lateral sclerosis","volume":"122","author":"Spataro","year":"2010","journal-title":"Acta Neurol Scand"},{"key":"R18-20261019","doi-asserted-by":"crossref","first-page":"206","DOI":"10.3109\/17482968.2011.572979","article-title":"Causes and places of death of patients with amyotrophic lateral sclerosis in south-west China","volume":"12","author":"Yang","year":"2011","journal-title":"Amyotroph Lateral 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Neurol"},{"key":"R25-20261019","doi-asserted-by":"crossref","first-page":"1002","DOI":"10.1007\/s00415-015-7665-z","article-title":"Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: Patients'perspectives","volume":"262","author":"Greenaway","year":"2015","journal-title":"J Neurol"},{"issue":"(Suppl 1)","key":"R26-20261019","doi-asserted-by":"crossref","first-page":"S40","DOI":"10.4103\/0972-2327.192885","article-title":"Palliative care and the Indian neurologist","volume":"19","author":"Gursahani","year":"2016","journal-title":"Ann Indian Acad Neurol"},{"key":"R27-20261019","doi-asserted-by":"crossref","first-page":"e0177555","DOI":"10.1371\/journal.pone.0177555","article-title":"Is survival improved by the use of NIV and PEG in amyotrophic lateral sclerosis (ALS)? A post-mortem study of 80 ALS patients","volume":"12","author":"Burkhardt","year":"2017","journal-title":"PLoS One"},{"key":"R28-20261019","doi-asserted-by":"crossref","first-page":"247","DOI":"10.3109\/09638288.2011.605511","article-title":"The need for support services for family carers of people with motor neurone disease (MND): Views of current and former family caregivers a qualitative study","volume":"34","author":"O'Brien","year":"2012","journal-title":"Disabil Rehabil"},{"key":"R29-20261019","doi-asserted-by":"crossref","first-page":"708","DOI":"10.1177\/0269216320908775","article-title":"The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review","volume":"34","author":"Flemming","year":"2020","journal-title":"Palliat Med"},{"key":"R30-20261019","first-page":"1178224218813914","article-title":"Palliative care in motor neurone disease: Where are we now?","volume":"12","author":"Oliver","year":"2019","journal-title":"Palliat Care"},{"key":"R31-20261019","doi-asserted-by":"crossref","first-page":"374","DOI":"10.5005\/jp-journals-10071-24464","article-title":"Simplified legal procedure for end-of-life decisions in India: A new dawn in the care of the dying?","volume":"27","author":"Mani","year":"2023","journal-title":"Indian J Crit Care Med"},{"key":"R32-20261019","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1016\/j.zefq.2023.04.011","article-title":"Advance care planning in India: Current status and future directions. A short narrative review","volume":"180","author":"Gursahani","year":"2023","journal-title":"Z Evid Fortbild Qual Gesundhwes"}],"container-title":["Annals of Indian Academy of Neurology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.ovid.com\/10.4103\/aian.aian_1234_25","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,19]],"date-time":"2026-10-19T13:05:17Z","timestamp":1792415117000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.ovid.com\/10.4103\/aian.aian_1234_25"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,5]]},"references-count":32,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2026]]}},"URL":"https:\/\/doi.org\/10.4103\/aian.aian_1234_25","relation":{},"ISSN":["0972-2327","1998-3549"],"issn-type":[{"value":"0972-2327","type":"print"},{"value":"1998-3549","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,5]]},"assertion":[{"value":"2025-11-21","name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-03-19","name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}}]}}