European Survey: Dysphagia Management in Patients with Neuromuscular Diseases

Abstract

Dysphagia is common in patients with neuromuscular diseases (NMDs). Its management differs by country and clinical setting. The purpose of this study was to describe current practices in the management of dysphagia in NMDs across Europe. An online survey of sixteen questions was developed, including basic information on facilities, existence of a management protocol, availability of dedicated therapists, tools used during screening, assessment, treatment stages, and treatment strategies. The survey was rolled out to European healthcare facilities providing care for NMDs. A total of 140 facilities across 25 European countries completed the survey. Substantial discrepancies in dysphagia management were identified among respondents. Seventy-two percent of the facilities reported having a protocol for at least one of the three management stages whereas only 39% had one for all. Speech and language therapists were reported as involved throughout the entire management stage while participation of other members from multidisciplinary teams varied depending on the stage. Clinical swallowing assessment was the most frequently reported tool in the assessment and treatment stages. For screening, questionnaires were the most frequently used while instrumental examinations were mainly reported in the assessment stage. For the treatment stage, adaptation strategies (diet, food, and posture) were the most reported approaches. In conclusion, the survey highlighted the absence of a defined protocol concerning the management of dysphagia in most of the surveyed healthcare facilities. Standardized training strategies and guidelines are necessary in the future to familiarize clinicians with each stage of the management of dysphagia.

Keywords: Deglutition; Dysphagia; Neuromuscular diseases; Survey; Swallowing disorders.