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Best practice recommendations for speech-language pathology in children with neuromuscular disorders: A Delphi-based
Mieke Kooi-van Es1,2, Corrie E Erasmus3, Nicoline B M Voet1,4
1Rehabilitation Centre Klimmendaal, Arnhem, The Netherlands.
Insights
This study developed best practice recommendations for speech-language pathologists (SLPs) treating children with paediatric neuromuscular disorders (pNMD). These guidelines address dysphagia and dysarthria, ensuring optimal care for affected children.
Area of Science:
- Neurology
- Speech-Language Pathology
- Pediatrics
Background:
- Paediatric neuromuscular disorders (pNMD) frequently cause dysphagia and dysarthria.
- Lack of evidence-based guidelines for speech-language pathology (SLP) in pNMD can compromise care.
- This study addresses the need for standardized SLP interventions in pNMD.
Purpose of the Study:
- To achieve consensus on best practice recommendations for SLP intervention in pNMD.
- To provide guidance for SLPs managing swallowing and speech difficulties in children with pNMD.
- To establish evidence-based strategies for SLP in congenital myopathy, Duchenne muscular dystrophy, myotonic dystrophy type 1, and spinal muscular atrophy type 2.
Main Methods:
- A modified Delphi technique was employed with experienced Dutch SLPs.
- Two online survey rounds and a consensus meeting were conducted.
- Experts proposed and rated intervention items for specific pNMD types and symptoms.
Main Results:
- Consensus was reached on intervention items for dysphagia, dysarthria, drooling, and oral hygiene in pNMD.
- Best practice recommendations were developed, encompassing six core intervention components.
- The recommendations provide a framework for clinical decision-making for SLPs.
Conclusions:
- The study provides essential best practice recommendations for SLPs in the field of pNMD.
- These guidelines aim to improve clinical decision-making and ensure quality of care.
- The recommendations cover a range of interventions tailored to the needs of children with pNMD.
Purpose:
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.
Method:
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.
Result:
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.
Conclusion:
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.
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