Neurology and Therapy (May 2024)
Myasthenia Gravis Disease Burden and Its Impact on Satisfaction with Life: A Qualitative Survey of Patients’ Perspectives in Japan
Abstract
Abstract Introduction Myasthenia gravis (MG) has a negative impact on patients’ health-related quality of life; however, many clinicians do not fully understand their patients’ lived experience of the disease. To understand the actual conditions of patients with MG and clarify the problems they perceive, we conducted a survey to evaluate the effects of the disease on patients’ daily life and work. Methods A questionnaire-based, qualitative, cross-sectional, non-interventional survey was conducted in Japan between April and May 2022 in patients with MG who were receiving regular outpatient treatment. The questionnaire included items regarding the patients’ disease characteristics and experience, satisfaction with life, current treatment status, and treatment satisfaction. Results In total, 452 patients were included in the survey population (66.6% aged ≥ 60 years; 64.6% with MG disease duration ≥ 10 years; 76.6% acetylcholine receptor [AChR] autoantibody positive). The symptoms of MG had a significant impact on the patients’ daily lives, with the most common symptoms being fatigability (74.8%), ptosis (59.7%), diplopia (54.2%), and weakness in the arms and/or legs (50.9%). Patients commonly identified exercise (73.7%), work 68.0%), hobbies (60.4%), travel (60.0%), and socializing with friends (59.7%) as being difficult to perform, with approximately 50% of patients reporting that hospitalization sometimes interfered with their ability to work. In total, 27.2% of patients were dissatisfied with life, with the highest rates of dissatisfaction among patients who were either positive for muscle-specific kinase (MuSK) autoantibodies or seronegative for both AChR and MuSK autoantibodies. Conclusion In Japanese patients with MG, over 25% are dissatisfied with life, indicating several unmet needs in this population.
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