Rehabilitation Centre Klimmendaal, Arnhem, The Netherlands.
Department of Rehabilitation, Radboud University Medical Centre, Radboud Institute for Health Sciences, Nijmegen, The Netherlands.
Int J Speech Lang Pathol. 2024 Feb;26(1):45-58. doi: 10.1080/17549507.2023.2181224. Epub 2023 Mar 10.
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.
由于小儿神经肌肉疾病(pNMD)中吞咽困难和构音障碍的高发病率,言语-语言病理学(SLP)被认为是一种重要的干预手段。目前缺乏针对 pNMD 的 SLP 的循证指南,这可能会导致患儿无法获得最佳的治疗。本研究旨在就 pNMD 中的 SLP 干预达成共识,并提出最佳实践建议。
采用改良 Delphi 技术,召集了一组经验丰富的荷兰言语语言病理学家组成专家组。在两轮在线调查和一次面对面的共识会议中,SLP 专家针对四种类型的 pNMD(先天性肌病、杜氏肌营养不良症、肌强直性肌营养不良症 1 型和脊髓性肌萎缩症 2 型)的病例提出了干预措施,涵盖了吞咽困难、构音障碍、流涎和口腔卫生问题的症状。他们对共识水平进行了评估。
达成共识的干预措施被纳入最佳实践建议中。这些建议涵盖了适合描述症状的六个核心干预组成部分(等待观察、解释和建议、训练和治疗、辅助器具和调整、向其他学科转介和监测)。
了解治疗选择对于促进言语-语言病理学家的临床决策至关重要。本研究为从事 pNMD 领域的言语-语言病理学家提供了最佳实践建议。