Children with neuromuscular disorders experience problems with chewing, swallowing, speaking, loss of saliva and oral hygiene, sometimes with serious consequences in terms of participation and quality of life. In the last decades, awareness and knowledge about the pathophysiology of these problems has increased, and speech-language therapists have acquired pivoting roles in multi-disciplinary pediatric NMD (pNMD) teams. Because pNMD represents a heterogeneous and very small group, building up experience and knowledge is not self-evident for speech-language therapists and treatment guidance is needed.
This study resulted in a guidance created with practice-oriented recommendations for speech therapists that can facilitate clinical reasoning within the context of a child and thereby contribute to improving personalized care for these children. The results of this study, performed by Mieke Kooi-van Es (Rehabilitation), Corrie Erasmus (Pediatric neurology), Nicole Voet (Rehabilitation), Lenie van den Engel-Hoek (Rehabilitation), Philip van der Wees (Rehabilitation, IQ healthcare), were published in the International Journal of Speech-Language Pathology on 10 March 2023.
A modified Delphi technique was used to achieve expert consensus based on integrating clinical experience and literature findings among experienced Dutch speech-language therapists during 2 online survey rounds and a consensus meeting. We discovered that interventions in pNMD exist primarily of explanation and advice and only a small part of training and treatment. The items that achieved consensus were incorporated into best practice recommendations, covering four types of pNMD: congenital myopathy, Duchene muscular dystrophy, myotonic dystrophy type 1 and spinal muscular atrophy type 2.
Full article: Best practice recommendations for speech-language pathology in children with neuromuscular disorders: A Delphi-based consensus study (tandfonline.com)
Best practice recommendations: Best-practice-recommendations-SLP-pNMD.aspx (radboudumc.nl), Handreiking-voor-logopedische-interventie-pNMA.aspx (radboudumc.nl)
Kooi-van Es, M., Erasmus, C. E., Voet, N. B. M., Van de Engel-Hoek, L., & Van der Wees, P. J. (2023). Consensus based recommendations for speech language therapist intervention in dysphagia and dysarthria in children with neuromuscular disorders: a Delphi study. International Journal of Speech-Language Pathology, 1-14. https://doi.org/10.1080/17549507.2023.2181224
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