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Article: A pilot study of an integrated, personalized, respiratory and motor telerehabilitation program for pediatric patients with hereditary neuromuscular disorders
Title | A pilot study of an integrated, personalized, respiratory and motor telerehabilitation program for pediatric patients with hereditary neuromuscular disorders |
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Authors | |
Keywords | health-related quality of life motor neuromuscular disorder respiratory telerehabilitation |
Issue Date | 14-Oct-2023 |
Publisher | Wiley |
Citation | Muscle & Nerve, 2023, v. 68, n. 6, p. 857-864 How to Cite? |
Abstract | IntroductionTelerehabilitation provides physical training to patients through telecommunication networks. We examined the feasibility, safety, and efficacy of an integrated, personalized, respiratory and motor telerehabilitation program for pediatric patients with hereditary neuromuscular disorders (NMDs). MethodsStable pediatric patients were recruited for a 16-week home training program with personalized pulmonary, upper and lower limb exercises. Patients reviewed instructional videos at home and attended bi-weekly follow-ups through video or audio calls, text messages, or emails. The primary outcomes were respiratory function, Medical Research Council (MRC) grading, hand/pinch strength, 6-minute walk test, and Pediatric Quality-of-Life Inventory 3.0 Neuromuscular Module survey. The secondary outcomes were study compliance and user feedback. ResultsPatients with spinal muscular atrophy (n = 4), congenital myasthenic syndrome (n = 2), and Duchenne muscular dystrophy (n = 2) completed the program. The median weekly exercise time was 101.3 min (range: 30.0–266.9). No extra face-to-face physiotherapy sessions were requested by the patients. No adverse events were reported. After the study, patients showed improvements in maximal expiratory pressure (35.0 vs. 47.5 cm H2O, p = .028) and maintained their MRC grade, hand/pinch strength, and walking distance. Patients also reported improvements in the Pediatric Quality-of-Life Inventory 3.0 Neuromuscular Module survey score (74.5 vs. 87.0, p = .036). Patients rated the overall program highly (mean: 4.00/5.00) and recommended it as a standard of care (mean: 4.38/5.00). DiscussionOur telerehabilitation program was feasible, safe, and possibly effective for this pilot cohort of stable pediatric patients with hereditary NMDs. Larger-scale studies for longer periods are warranted to confirm the results. |
Persistent Identifier | http://hdl.handle.net/10722/339871 |
ISSN | 2023 Impact Factor: 2.8 2023 SCImago Journal Rankings: 0.964 |
ISI Accession Number ID |
DC Field | Value | Language |
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dc.contributor.author | Yu, Michael Kwan Leung | - |
dc.contributor.author | Chiu, Alice Yuen Yee | - |
dc.contributor.author | Chau, Shuk Kuen | - |
dc.contributor.author | S Rosa Duque, Jaime | - |
dc.contributor.author | Wong, Wilfred Hing Sang | - |
dc.contributor.author | Chan, Sophelia Hoi Shan | - |
dc.date.accessioned | 2024-03-11T10:39:54Z | - |
dc.date.available | 2024-03-11T10:39:54Z | - |
dc.date.issued | 2023-10-14 | - |
dc.identifier.citation | Muscle & Nerve, 2023, v. 68, n. 6, p. 857-864 | - |
dc.identifier.issn | 0148-639X | - |
dc.identifier.uri | http://hdl.handle.net/10722/339871 | - |
dc.description.abstract | <h3>Introduction</h3><p>Telerehabilitation provides physical training to patients through telecommunication networks. We examined the feasibility, safety, and efficacy of an integrated, personalized, respiratory and motor telerehabilitation program for pediatric patients with hereditary neuromuscular disorders (NMDs).</p><h3>Methods</h3><p>Stable pediatric patients were recruited for a 16-week home training program with personalized pulmonary, upper and lower limb exercises. Patients reviewed instructional videos at home and attended bi-weekly follow-ups through video or audio calls, text messages, or emails. The primary outcomes were respiratory function, Medical Research Council (MRC) grading, hand/pinch strength, 6-minute walk test, and Pediatric Quality-of-Life Inventory 3.0 Neuromuscular Module survey. The secondary outcomes were study compliance and user feedback.</p><h3>Results</h3><p>Patients with spinal muscular atrophy (<em>n</em> = 4), congenital myasthenic syndrome (<em>n</em> = 2), and Duchenne muscular dystrophy (<em>n</em> = 2) completed the program. The median weekly exercise time was 101.3 min (range: 30.0–266.9). No extra face-to-face physiotherapy sessions were requested by the patients. No adverse events were reported. After the study, patients showed improvements in maximal expiratory pressure (35.0 vs. 47.5 cm H2O, <em>p</em> = .028) and maintained their MRC grade, hand/pinch strength, and walking distance. Patients also reported improvements in the Pediatric Quality-of-Life Inventory 3.0 Neuromuscular Module survey score (74.5 vs. 87.0, <em>p</em> = .036). Patients rated the overall program highly (mean: 4.00/5.00) and recommended it as a standard of care (mean: 4.38/5.00).</p><h3>Discussion</h3><p>Our telerehabilitation program was feasible, safe, and possibly effective for this pilot cohort of stable pediatric patients with hereditary NMDs. Larger-scale studies for longer periods are warranted to confirm the results.<a href="https://onlinelibrary-wiley-com.eproxy.lib.hku.hk/cms/asset/98e72ebd-3057-4dd4-8fe2-69ed081445d8/mus27982-toc-0001-m.jpg"></a></p> | - |
dc.language | eng | - |
dc.publisher | Wiley | - |
dc.relation.ispartof | Muscle & Nerve | - |
dc.rights | This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. | - |
dc.subject | health-related quality of life | - |
dc.subject | motor | - |
dc.subject | neuromuscular disorder | - |
dc.subject | respiratory | - |
dc.subject | telerehabilitation | - |
dc.title | A pilot study of an integrated, personalized, respiratory and motor telerehabilitation program for pediatric patients with hereditary neuromuscular disorders | - |
dc.type | Article | - |
dc.identifier.doi | 10.1002/mus.27982 | - |
dc.identifier.scopus | eid_2-s2.0-85174197302 | - |
dc.identifier.volume | 68 | - |
dc.identifier.issue | 6 | - |
dc.identifier.spage | 857 | - |
dc.identifier.epage | 864 | - |
dc.identifier.eissn | 1097-4598 | - |
dc.identifier.isi | WOS:001086730500001 | - |
dc.identifier.issnl | 0148-639X | - |