{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T07:25:52Z","timestamp":1788852352144,"version":"build-2803163510"},"reference-count":37,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2025,3,16]],"date-time":"2025-03-16T00:00:00Z","timestamp":1742083200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2025,3,16]],"date-time":"2025-03-16T00:00:00Z","timestamp":1742083200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Neuromuscular Diseases"],"published-print":{"date-parts":[[2025,5]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>In the Netherlands a centralised approach to respiratory care for patients with Amyotrophic Lateral Sclerosis is used based on national guidelines. Patients with Amyotrophic Lateral Sclerosis are referred to one of 4 centres for Home Mechanical Ventilation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>Our aim was to evaluate the respiratory care according to the Dutch guideline by evaluation of reasons for starting non-invasive ventilation, timing of initiating and survival in patients with Amyotrophic Lateral Sclerosis using non-invasive ventilation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method:<\/jats:title>\n                    <jats:p>A retrospective chart-review was performed of 323 patients, who had been referred to centres for Home Mechanical Ventilation in 2016\u20132018. Data collected included symptoms of hypoventilation, forced vital capacity, blood gasses, criteria for (not) initiating non-invasive ventilation, and survival. Kaplan-Meyer curves and Multivariate Cox proportional hazard regression were used in the analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>The main criteria used for initiating non-invasive ventilation were hypercapnia (77%) and the presence of orthopnea and\/or dyspnoea (25%). Median survival after starting non-invasive ventilation was 11 months, and was shorter for patients with bulbar disease onset and older age. The proportion of the total disease duration that was spent on non-invasive ventilation was not significantly affected by age, sex or site of disease. Seventy nine percent of the patients who didn\u2019t start non-invasive ventilation had reached a joint decision with their caregivers and\/or physicians.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>Key outcomes of the Dutch centralised respiratory care approach have shown that most patients were initiated on non-invasive ventilation due to presence of hypercapnia and\/or dyspnoea\/orthopnea, which is according to the Dutch guidelines. Half of patients spent at least 33% of their disease duration on non-invasive ventilation. To help find the optimal criteria and timing for non-invasive ventilation it would be useful for other countries to share their key outcomes as well.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/22143602251319167","type":"journal-article","created":{"date-parts":[[2025,3,17]],"date-time":"2025-03-17T02:42:01Z","timestamp":1742179321000},"page":"372-381","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":2,"title":["Initiating non-invasive ventilation in patients with Amyotrophic Lateral Sclerosis in The Netherlands: A centralised approach to respiratory care"],"prefix":"10.1177","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0009-0005-7400-4391","authenticated-orcid":false,"given":"Rineke JH","family":"Jaspers Focks","sequence":"first","affiliation":[{"name":"Roessingh, Centre for Rehabilitation, Enschede, The \rNetherlands"},{"name":"Department of Pulmonary Diseases &amp; Home Mechanical Ventilation, University of Groningen, University Medical Centre Groningen, Groningen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3651-2564","authenticated-orcid":false,"given":"Jochem","family":"Helleman","sequence":"additional","affiliation":[{"name":"Department of Rehabilitation, Physical Therapy Science &amp; Sports, UMC Utrecht Brain Centre, University Medical Centre Utrecht, the Netherlands - Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht"},{"name":"Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht, and De Hoogstraat Rehabilitation, Utrecht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6559-3965","authenticated-orcid":false,"given":"Leonard H","family":"van den Berg","sequence":"additional","affiliation":[{"name":"Department of Neurology, UMC Utrecht Brain Centre, University Medical Centre Utrecht, Utrecht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5955-8012","authenticated-orcid":false,"given":"Johanna MA","family":"Visser-Meily","sequence":"additional","affiliation":[{"name":"Department of Rehabilitation, Physical Therapy Science &amp; Sports, UMC Utrecht Brain Centre, University Medical Centre Utrecht, the Netherlands - Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht"},{"name":"Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht, and De Hoogstraat Rehabilitation, Utrecht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-0994-9845","authenticated-orcid":false,"given":"Michael A","family":"Gaytant","sequence":"additional","affiliation":[{"name":"Centre of Home Mechanical Ventilation, Department of Pulmonology, University Medical Centre Utrecht, Utrecht University, Utrecht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3809-5725","authenticated-orcid":false,"given":"Peter J","family":"Wijkstra","sequence":"additional","affiliation":[{"name":"Department of Pulmonary Diseases &amp; Home Mechanical Ventilation, University of Groningen, University Medical Centre Groningen, Groningen, The Netherlands"},{"name":"Groningen Research Institute for Asthma and COPD (GRIAC), University of Groningen, University Medical Centre Groningen, Groningen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1269-0710","authenticated-orcid":false,"given":"Anita","family":"Beelen","sequence":"additional","affiliation":[{"name":"Department of Rehabilitation, Physical Therapy Science &amp; Sports, UMC Utrecht Brain Centre, University Medical Centre Utrecht, the Netherlands - Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht"},{"name":"Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht, and De Hoogstraat Rehabilitation, Utrecht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,3,16]]},"reference":[{"key":"e_1_3_4_2_2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0177555"},{"key":"e_1_3_4_3_2","doi-asserted-by":"publisher","DOI":"10.1080\/17482960701656940"},{"key":"e_1_3_4_4_2","doi-asserted-by":"publisher","DOI":"10.1111\/ane.13043"},{"key":"e_1_3_4_5_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(05)70326-4"},{"key":"e_1_3_4_6_2","doi-asserted-by":"publisher","DOI":"10.3389\/fneur.2018.00578"},{"key":"e_1_3_4_7_2","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2018.1457058"},{"key":"e_1_3_4_8_2","unstructured":"NICE. 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