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Best practice recommendations for speech-language pathology in children with neuromuscular disorders: A Delphi-based consensus study

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Version 2 2024-01-30, 13:00
Version 1 2023-03-22, 16:00
journal contribution
posted on 2024-01-30, 13:00 authored by Mieke Kooi-van Es, Corrie E. Erasmus, Nicoline B. M. Voet, Lenie van den Engel-Hoek, Philip J. van der Wees

Speech-language pathology (SLP) is considered an essential intervention due to the high prevalence of dysphagia and dysarthria in paediatric neuromuscular disorders (pNMD). Evidence-based guidelines for SLP in pNMD are missing and children could be deprived the best of care. This study aimed to achieve consensus and present best practice recommendations on SLP intervention in pNMD.

A modified Delphi technique was used with a panel of experienced Dutch speech-language pathologists. In two online survey rounds and a face-to-face consensus meeting, the SLP experts proposed intervention items for cases of four types of pNMD (congenital myopathy, Duchenne muscular dystrophy, myotonic dystrophy type 1, and spinal muscular atrophy type 2), covering symptoms of dysphagia, dysarthria, drooling, and oral hygiene problems. They rated the level of agreement.

Intervention items that achieved consensus were incorporated into best practice recommendations. These recommendations cover six core intervention components (wait and see, explanation and advice, training and treatment, aids and adjustments, referral to other disciplines, and monitoring) suitable for the described symptoms.

Insight into treatment options is essential to facilitate speech-language pathologists in clinical decision-making. The current study led to best practice recommendations for speech-language pathologists working within the field of pNMD.

Funding

This work was supported by the the Johanna KinderFonds under Grant 20170039; by Stichting Janivo under Grant 2018451; by the Damsté-Terpstra Fonds under Grant 200111/2; and the Christina Bader Stichting under Grant 619. The funding body had no influence on the conduct of the study.

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    International Journal of Speech Language Pathology

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