{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,5]],"date-time":"2026-06-05T01:36:34Z","timestamp":1780623394058,"version":"3.54.1"},"reference-count":28,"publisher":"Wiley","issue":"12","license":[{"start":{"date-parts":[[2013,2,9]],"date-time":"2013-02-09T00:00:00Z","timestamp":1360368000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Euro J of Neurology"],"published-print":{"date-parts":[[2013,12]]},"abstract":"<jats:sec><jats:title>Background and purpose<\/jats:title><jats:p>We assessed the first evaluation at a large ventilation clinic in the Netherlands to: (i) determine what proportion of patients with motor neuron disease would benefit from earlier referral; and (ii) examine the patient preferences regarding ventilatory support.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Observational study at a single centre with a catchment area of 7.6\u00a0million inhabitants. Data on disease status, the referral process and patients' preferences regarding ventilatory support were collected during the first home ventilation services (<jats:styled-content style=\"fixed-case\">HVS<\/jats:styled-content>) assessment and analysed for correlation with the presence of daytime hypercapnia and suspected nocturnal hypoventilation. The latter conditions require immediate (within 48\u2005h) or subacute (within 3\u2005weeks) initiation of ventilatory support.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Vital capacity (in percentage of predicted value, <jats:styled-content style=\"fixed-case\">VC<\/jats:styled-content>%pred) was assessed by referring physicians in 84% of the 217 referred patients; the mean <jats:styled-content style=\"fixed-case\">VC<\/jats:styled-content>%pred was 69% (<jats:styled-content style=\"fixed-case\">SD<\/jats:styled-content> 16). One\u2010hundred and ninety\u2010one patients attended the first <jats:styled-content style=\"fixed-case\">HVS<\/jats:styled-content> assessment without ventilatory support, at a median of 21\u2005days following referral: 18% had respiratory failure (daytime hypercapnia), 19% had normocapnia but were suspected of nocturnal hypoventilation, and 63% had normocapnia without symptoms. Following the <jats:styled-content style=\"fixed-case\">HVS<\/jats:styled-content> assessment, 25 patients (13%) declined home mechanical ventilation; this occurred more often in patients with (14\/70) compared with patients without respiratory impairment (11\/121; <jats:italic>P\u2005<\/jats:italic>&lt;\u20050.05).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>A meaningful proportion of patients who desire ventilatory support are referred to a ventilation clinic after already developing respiratory failure. Future studies could examine means, including more sensitive respiratory measures, to detect those patients who could benefit from earlier referral.<\/jats:p><\/jats:sec>","DOI":"10.1111\/ene.12096","type":"journal-article","created":{"date-parts":[[2013,2,9]],"date-time":"2013-02-09T06:34:31Z","timestamp":1360391671000},"page":"1524-1530","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":14,"title":["Treatment of respiratory impairment in patients with motor neuron disease in the <scp>N<\/scp>etherlands: patient preference and timing of referral"],"prefix":"10.1111","volume":"20","author":[{"given":"J.","family":"Raaphorst","sequence":"first","affiliation":[{"name":"Department of Neurology Academic Medical Center University of Amsterdam Amsterdam the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J.","family":"Tuijp","sequence":"additional","affiliation":[{"name":"Department of Neurology Academic Medical Center University of Amsterdam Amsterdam the Netherlands"},{"name":"Center for Home Mechanical Ventilation University Medical Center Utrecht Utrecht the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"L.","family":"Verweij","sequence":"additional","affiliation":[{"name":"Center for Home Mechanical Ventilation University Medical Center Utrecht Utrecht the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"E. J. A.","family":"Westermann","sequence":"additional","affiliation":[{"name":"Center for Home Mechanical Ventilation University Medical Center Utrecht Utrecht the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A. J.","family":"van der Kooi","sequence":"additional","affiliation":[{"name":"Department of Neurology Academic Medical Center University of Amsterdam Amsterdam the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M. A.","family":"Gaytant","sequence":"additional","affiliation":[{"name":"Center for Home Mechanical Ventilation University Medical Center Utrecht Utrecht the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"L. H.","family":"van den Berg","sequence":"additional","affiliation":[{"name":"Department of Neurology Rudolf Magnus Institute of Neuroscience University Medical Center Utrecht Utrecht the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.","family":"de Visser","sequence":"additional","affiliation":[{"name":"Department of Neurology Academic Medical Center University of Amsterdam Amsterdam the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M. J.","family":"Kampelmacher","sequence":"additional","affiliation":[{"name":"Center for Home Mechanical Ventilation University Medical Center Utrecht Utrecht the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2013,2,9]]},"reference":[{"key":"e_1_2_6_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(05)70326-4"},{"key":"e_1_2_6_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-1331.2010.03036.x"},{"key":"e_1_2_6_4_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp-2011-300480"},{"key":"e_1_2_6_5_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0317167100009653"},{"key":"e_1_2_6_6_1","first-page":"509","article-title":"Amyotrophic lateral sclerosis: mechanical ventilation \u2013 or not right?","volume":"148","author":"Kampelmacher MJ","year":"2004","journal-title":"Ned Tijdschr Geneeskd"},{"key":"e_1_2_6_7_1","doi-asserted-by":"publisher","DOI":"10.3109\/17482968.2011.626053"},{"key":"e_1_2_6_8_1","unstructured":"http:\/\/statline.cbs.nl\/StatWeb\/selection\/default.aspx?DM=SLNL(accessed 01\/11\/2012)."},{"key":"e_1_2_6_9_1","unstructured":"VSCA.Clinical practice standard on home mechanical ventilation issued by the Health Care Inspectorate of The Netherlands. 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