Do people with Myasthenia Gravis need speech-language pathology services? A national survey of consumers' experiences and perspectives

Purpose: This study explored experiences of bulbar (speech, voice and swallowing) symptoms in Australian adults with Myasthenia Gravis (MG), and the relationship between these symptoms and community participation and quality-of-life. Further, it examined access to and experiences with speech-language pathology (SLP) services, and awareness and perceptions of the SLP's role. Method: A cross-sectional mixed methods online survey collected data using researcher-designed questions and patient-reported outcome measures (PROMs) including the Dysarthria Impact Profile (DIP), Voice Handicap Index (VHI), Dysphagia Handicap Index (DHI), Community Integration Questionnaire-Revised (CIQ-R), and Myasthenia Gravis Quality of Life-Revised 15 (MG-QOL15r). Analyses included descriptive and non-parametric statistics, and content analysis. Result: Participants were 111 adults with MG living in Australia. 74% of respondents reported experiencing symptoms of speech difficulties but only 20% of those were referred to SLP services. Similarly, 85% of respondents reported experiencing swallowing difficulties, but only 26% were referred to SLP. Voice handicap (VHI) was strongly correlated with the psychosocial impact of dysarthria (DIP) and dysphagia handicap (DHI). Increased voice and dysphagia handicap were moderately correlated with worse quality-of-life. There was generally poor awareness of the SLP's role and many were reluctant to attend SLP appointments. Conclusion: These findings highlight unmet consumer needs for MG-related bulbar symptoms, and a lack of awareness of SLP services. It is suggested that, in addition to other strategies, consumer education and increased awareness are required to address these unmet needs.