A Cross‐Sectional Study of Quality of Life and Body Image in Myasthenia Gravis Patients: A Novel Approach Using the Individualized Neuromuscular Quality of Life Questionnaire

Introduction/Aims Many generic and disease‐specific quality of life (QoL) measures have been used to understand the perspectives of patients with myasthenia gravis (MG). However, there is limited data regarding the use of the Individualized Neuromuscular Quality of Life Questionnaire (INQoL) and the impact of body image in patients with MG. Methods This was a cross‐sectional cohort of 258 patients with MG who completed several QoL measures, including the INQoL, 36‐Item Short Form Survey (SF‐36) and 15‐Item Myasthenia Gravis Quality of Life Scale (MG‐QoL15). We compared scores of different QoL measures with each other and also compared SF‐36 scores to the general population. Linear regression models were built to investigate factors associated with QoL and body image in MG patients. Results MG patients had lower SF‐36 scores compared to the general population. Of the different QoL measures, the INQoL correlated the strongest with the MG‐QoL15 ( r = 0.80, p < 0.05). Worse QoL (measured by the INQoL) was significantly correlated with increased disease severity ( p = 0.0054) and fatigue ( p = 0.0019), younger age ( p = 0.0471), and retirement ( p = 0.0450). Worse INQoL body image scores were significantly associated with increased fatigue ( p = 0.0189) and ptosis severity ( p = 0.0298). Discussion The INQoL showed that body image is negatively affected in people with MG, suggesting it poses a burden and may be worth considering when measuring QoL. Further studies are needed to assess other factors associated with reduced body image, besides ptosis and fatigue, in people living with MG.