{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T16:54:55Z","timestamp":1790355295494,"version":"4.1.0"},"reference-count":26,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2023,2,14]],"date-time":"2023-02-14T00:00:00Z","timestamp":1676332800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Develop Med Child Neuro"],"published-print":{"date-parts":[[2023,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aim<\/jats:title><jats:p>To (1) compare the perceived benefit of long\u2010term mechanical insufflation\u2010exsufflation (MI\u2010E) of children with neuromuscular disorders (NMDs) and central nervous system (CNS) disorders, including health care needs and treatment routines and (2) describe the children's health\u2010related quality of life (HRQoL).<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>This cross\u2010sectional study used a questionnaire and memory card data to assess the perceived benefit of MI\u2010E via the Visual Analogue Scale (VAS; 10 maximum), willingness to pause treatment, level of health care needs before and after MI\u2010E initiation, and the children's treatment routines. A DISABKIDS questionnaire assessed HRQoL (100 maximum).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Seventy\u2010three children using MI\u2010E participated (42 males, median [interquartile range {IQR}] age 10\u2009years 2 months [6\u2009years 3 months\u201314\u2009years 1 month]), 47 with NMDs (such as spinal muscular atrophy and Duchenne muscular dystrophy) and 26 with CNS disorders (such as cerebral palsy, encephalitis, neurometabolic and other diseases). The median (IQR) VAS score for the perceived benefit of MI\u2010E therapy at stable state and respiratory tract infection were 9 (6\u201310) and 10 (8.5\u201310) respectively. Sixty\u2010two per cent were reluctant or unwilling to pause MI\u2010E therapy, with no NMD versus CNS disorder group difference. After MI\u2010E initiation, fewer physician consultations and hospitalizations were reported by the group with NMDs. The MI\u2010E routine was similar in both groups. The mean (SD) HRQoL score for 26 of 51 eligible children was 71 (16.7).<\/jats:p><\/jats:sec><jats:sec><jats:title>Interpretation<\/jats:title><jats:p>MI\u2010E treatment was generally perceived as beneficial and performed equally in both diagnostic groups. HRQoL was in line with children with a moderate\u2010to\u2010severe chronic condition.<\/jats:p><\/jats:sec><jats:sec><jats:title>What this paper adds<\/jats:title><jats:p>\n<jats:list list-type=\"bullet\">\n<jats:list-item><jats:p>Mechanical insufflation\u2010exsufflation (MI\u2010E) was generally perceived as beneficial by the children and parents.<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>The reported benefit of MI\u2010E was higher among daily than sporadic MI\u2010E users.<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>The MI\u2010E treatment routine did not differ between diagnostic groups.<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>The health\u2010related quality of life in this neuropaediatric population was in line with that of children with other moderate\u2010to\u2010severe chronic conditions.<\/jats:p><\/jats:list-item>\n<\/jats:list><\/jats:p><\/jats:sec>","DOI":"10.1111\/dmcn.15543","type":"journal-article","created":{"date-parts":[[2023,2,14]],"date-time":"2023-02-14T18:23:31Z","timestamp":1676399011000},"page":"655-663","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["User\u2010perceived impact of long\u2010term mechanical assisted cough in paediatric neurodisability"],"prefix":"10.1111","volume":"65","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1535-4146","authenticated-orcid":false,"given":"Brit","family":"Hov","sequence":"first","affiliation":[{"name":"Division of Paediatric and Adolescent Medicine Oslo University Hospital  Oslo Norway"},{"name":"Institute of Clinical Medicine University of Oslo  Oslo Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tiina","family":"Andersen","sequence":"additional","affiliation":[{"name":"Norwegian Advisory Unit on Long\u2010term Mechanical Ventilation, Thoracic Department Haukeland University Hospital  Bergen Norway"},{"name":"Faculty of Health and Social Sciences Western Norway University of Applied Science  Bergen Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michel","family":"Toussaint","sequence":"additional","affiliation":[{"name":"Centre de R\u00e9f\u00e9rence Neuromusculaire, D\u00e9partement de Neurologie Cliniques Universitaires de Bruxelles, H\u00f4pital Erasme, Universit\u00e9 Libre de Bruxelles  Brussels Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingvild B.","family":"Mikalsen","sequence":"additional","affiliation":[{"name":"Department of Paediatrics Stavanger University Hospital HF  Stavanger Norway"},{"name":"Department of Clinical Science University of Bergen  Bergen 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