Abstract
INTRODUCTION: Myasthenia gravis (MG) is an autoimmune disease causing motor fatiguability. The impact of MG on quality of life (QoL) is incompletely studied. Here, we explore the impact of disease activity on QoL. METHODS: Using the Swedish nationwide MG registry, 150 MG cases with concomitant EQ-5D-3L and MG-ADL, QMG and/or MG-QoL-15 scores were identified. An EQ-5D score was derived from EQ-5D-3L using the UK time trade-off tariff and compared to a Swedish reference population. Longitudinal analysis assessing the impact of change in MG-ADL on QoL was performed on data from the randomized-controlled RINOMAX trial. RESULTS: EQ-5D score was negatively correlated with MG-ADL, QMG and MG-QoL-15 (R = - 0.48, - 0.33, and - 0.66, respectively; p < 0.01). The usual activities dimension deviated most from reference population, although all dimensions were significantly impacted. Lower EQ-5D score was observed already at low-to-moderate disease activity, MG-ADL 3-5 points, compared to reference (0.71 [SD 0.23] vs. 0.81 [SD 0.04]; p = 0.01), and was further decreased with higher disease activity. Longitudinal analyses revealed a significant decrease of EQ-5D score per point increase in MG-ADL (β -0.050 [95%CI -0.077, -0.023]; p < 0.001). Most impact on EQ-5D score was observed by limb and respiratory items (limb β - 0.17 [95%CI - 0.26, - 0.071]; p = 0.001, respiratory β - 0.21 [95%CI - 0.39, - 0.031]; p = 0.022), while bulbar symptoms showed no effect on EQ-5D score. CONCLUSIONS: We observed a considerably decreased EQ-5D score already at low disease activity in MG patients, worsening with increasing disease activity. This indicates an unmet medical need that warrants improved treatment and care.