<p>Generalized myasthenia gravis (gMG) can impair a patient’s ability to perform activities of daily living. The fluctuating nature of gMG symptoms, particularly muscle weakness and fatigability, can make it difficult to assess treatment response. Several outcome measures are available to evaluate disease stability or progression by quantifying its effect on activities of daily living.</p>

There are a number of outcome measures to assess gMG. No tool is perfect, and none gives us the total or complete picture, although each one reveals a little about the disease’s impact on the individual. Because we are a research institution focusing on MG, we use all of the following at my program for a comprehensive approach: the Myasthenia Gravis Activities of Daily Living (MG-ADL), the Myasthenia Gravis Manual Muscle Test (MG-MMT), the Myasthenia Gravis Composite (MGC), the Myasthenia Gravis Quality of Life 15 revised (MG-QOL15r), the Myasthenia Gravis Impairment Index (MGII), the Quality of Life in Neurological Disorders (Neuro-QoL) Short Form Fatigue, and the Quantitative Myasthenia Gravis (QMG). I find the QMG to be time consuming, and I rarely use it in clinical practice; I mostly find it helpful in research.

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Although these outcome measures add a small amount of time to visits, many can be filled out by the patient on their own in the waiting room. The MG-QOL15r and MG-ADL scores highlight areas to explore while in discussion with the patient. However, I do not allow the outcome measures alone to dictate my management strategy. I use a comprehensive evaluation of what the patient is telling me, the results of my examination, and, to some degree, the results of these outcome measures in concert with the patient during shared decision making to determine our next steps.

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Longitudinal assessment with these tools is very helpful, and we use them at every encounter with the patient. Then we can establish patterns of response in terms of the progression of the disease and improvement if the patient responds to therapies. We use these outcome measures to provide an overview of where the patient is going, and we do not use them as a decision-making tool at any given point. The outcome measure scores can fluctuate regardless of whether the patient’s symptoms change, although, in general, the fluctuation in scores for the MG-ADL, MG-MMT, MGC, and QMG is very little, unless the patient has a clinical change.

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Where I see a wide variation in scores is with the MG-QOL15r and the Neuro-QoL Short Form Fatigue. The problem is that these outcome measures can be impacted by other things. Although we try to keep them MG specific, the patient’s interpretation allows intrusion from other disorders, making these scores a more global reflection of their quality of life. So, I can see a worsening of or an improvement in MG-QOL15r and Neuro-QoL Short Form Fatigue scores without any significant change in the clinical examination. In contrast, the other outcome measures respond fairly well to fluctuations in the disease state.