Clinical features, treatments, their impact, and Quality of Life for Myasthenia Gravis: This publication, in Journal of Clinical Neurosciences, Volume 118,(2023), Pages 16-22.
The Patient Reported Outcomes study, provides an update on the experience of Myasthenia Gravis (MG) patients in Australia Patients were recruited through the Myasthenia Alliance Australia and completed an online survey that included questions related to demographics, clinical features, treatment side-effects and quality of life (QOL) scales.
Female and seronegative patients reported a significantly greater symptom load, earlier disease onset, longer time to diagnosis, more MG exacerbations, treatment side-effects, and poorer QOL. For exacerbation management there was a higher rate of oral corticosteroid use, a lower use of Intravenous Immunoglobulin (IVIg) and Therapeutic Plasma Exchange (TPE).
Common treatment side-effects reported by 57–85% of patients and included fatigue, weight gain, a decrease in the ability to fight infections, gastrointestinal symptoms, and muscle weakness. The impact of MG on daily activities and QOL was considerable, but those who had a thymectomy reported better QOL.
The survey identified areas for potential practice improvement in MG treatments (corticosteroids, IVIg, TPE), particularly for exacerbation management, and review is recommended. Further research on gender and antibody status differentials regarding clinical features is required.
The journal article is available with free access until December 2023 and can be found here https://www.sciencedirect.com/science/article/pii/S0967586823002850.
The MAA gratefully acknowledge TerumoBCT’s significant contribution to this project and for the opportunity to work in partnership and the significant work by the authors: Janet Sansoni, Nidhi Menon, Lachlan Viali, Susan White and Steve Vucic.
Exploring impairments and allied health professional utilisation in people with myasthenia gravis: A cross-sectional study in Journal of Clinical Neurosciences, 4,(2023), Pages 9-16.
This study explored how people with myasthenia gravis experience impairments in vision, dizziness, hearing, and fatigue, and how these relate to balance confidence, community participation, and health-related quality of life. In addition, the study investigated the utilisation and perception of the allied health role in managing these impairments.
Visual and hearing impairments, along with fatigue, were correlated with health-related quality of life and community participation to varying degrees, while visual impairment and dizziness were correlated with balance confidence.
Perception and utilisation of allied health professionals was variable. Common barriers to improved utilisation included the perception of clinicians having poor knowledge of myasthenia gravis, previous poor experiences with clinicians, uncertainty about the clinicians’ role, and lack of awareness that symptoms were associated with myasthenia gravis.
This journal article can be accessed by clicking the following link: https://www.sciencedirect.com/science/article/pii/S0967586823001248.
Myasthenia Gravis (MG) Australian Survey 2022:
This Australian Survey was conducted in 2022 with the aim of compiling evidence to support advocacy for people living with MG to timely and just access to appropriate health care and funding. The study surveyed MG patients about a range of factors including quality of life, financial costs and access to clinical services.
The survey results can be accessed by clicking HERE.
The MAA gratefully acknowledge Terumo Blood Cell Technologies significant contribution to this project.