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Introduction <p>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.</p> Methods <p>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.</p> Results <p>EQ-5D score was negatively correlated with MG–ADL, QMG and MG–QoL-15 (<i>R</i> =  − 0.48, − 0.33, and − 0.66, respectively; <i>p</i> &lt; 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]; <i>p</i> = 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 (<i>β</i> –0.050 [95%CI –0.077, –0.023]; <i>p</i> &lt; 0.001). Most impact on EQ-5D score was observed by limb and respiratory items (limb <i>β</i> − 0.17 [95%CI − 0.26, − 0.071]; <i>p</i> = 0.001, respiratory <i>β</i> − 0.21 [95%CI − 0.39, − 0.031]; <i>p</i> = 0.022), while bulbar symptoms showed no effect on EQ-5D score.</p> Conclusions <p>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.</p>

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Impact of disease activity on quality of life and EQ-5D-3L score in myasthenia gravis: results from the Swedish MG registry

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  • 发表日期：

    2025年8月7日

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  • Malin Petersson,
  • Jing Wu,
  • Fredrik Berggren,
  • Ingrid Schager,
  • Fredrik Piehl,
  • Susanna Brauner

摘要

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.