Patient Perceptions of Needs and Expectations Regarding the Current Management of Myasthenia Gravis: A Biopsychosocial Study

Abstract

Introduction: Information on the biopsychosocial needs and healthcare experiences of people living with myasthenia gravis (PwMG) in Spain remains limited. This study aimed to describe self-reported experiences and provide an overview of the condition's physical, psychological, and social impact. Methods: A multicenter cross-sectional epidemiological study was conducted through a nationwide online survey completed by a geographically stratified sample of PwMG across 13 of Spain's 17 Autonomous Communities. Results: A total of 208 valid responses were analyzed (mean age 58.8; SD 15.2 years; range 16-94; 55.8% men). Nearly half (49.5%) reported generalized myasthenia gravis (MG), and 36.4% held a disability certificate. Although most respondents perceived their health as good or very good (45.2%), pain or discomfort affected 51.5%, and half reported emotional symptoms such as anxiety or depression. The mean EQ-VAS score was 66.1 (SD 20.6), reflecting a reduced health-related quality of life (HRQoL) compared with the general population. While satisfaction with access to and quality of medical care was generally high, many patients expressed concerns about limited psychological support and insufficient social care for themselves and their caregivers. Conclusion: PwMG in Spain generally perceive their health positively, but significant unmet needs persist in psychological care and social protection. These findings underscore the importance of comprehensive patient-centered strategies that integrate medical, emotional, and social support to improve quality of life in MG.