“Right now, right now the realistic goal is—I would say—is to not be any worse than I am now. You know, just kind of keep things stabilized and stay there. Not have these ups and downs.”
–Real person living with gMG2
Even as you manage gMG, recurring symptoms can interfere with patients’ lives and lead to a disconnect between clinical care and patients’ lived experiences.1
Considerations for improved gMG disease management
Even as you monitor patients, uncertainty around symptom recurrence can still weigh on them and lead them to recalibrate daily activities.1,2
Greater awareness of patients’ experience living with gMG may provide additional opportunities for more effective disease management.2 For further gMG awareness information, consider visiting the Myasthenia Gravis Foundation of America (MGFA). Encourage open dialogue with your patients and remind them to contact you immediately if they notice any changes in their symptoms.
An important treatment goal should be to minimize the effect of fluctuating symptoms on patients.2
Take another PASS
To uncover the impact of recurring symptoms on patients with gMG, ask:
Considering all the ways you are affected by [gMG], if you had to stay in your current state for the next months, would you say that your current disease state status is satisfactory?3,4
The Patient Acceptable Symptom State (PASS) evaluation is a single-question score that has been validated in several chronic inflammatory diseases.3,4
What goals might patients have for better gMG management?
What goals might patients have for better gMG management?
“...I mean, my ideal goal would be to become what I would define as normal. Being realistic...I would say my goal is just to kind of stabilize.”
–Real person living with gMG2
What goals might patients have for better gMG management?
“We don’t want to just survive—we want to thrive.”
–Real person living with gMG1
Previous
Next
References: 1. Law N, Davio K, Blunck M, et al. The lived experience of myasthenia gravis: a patient-led analysis. Neurol Ther. 2021;10(2):1103-1125. doi:10.1007/s40120-021-00285-w 2. Jackson K, Parthan A, Lauher-Charest M, et al. Understanding the symptom burden and impact of myasthenia gravis from the patient's perspective: a qualitative study. Neurol Ther. 2023;12(1):107-128. doi:10.1007/s40120-022-00408-x. Epub 2022 Nov 2. 3. Mendoza M, Tran C, Bril V, et al. Patient-acceptable symptom states in myasthenia gravis. Neurology. 2020;95:1617-1628. doi:10.1212/WNL.0000000000010574 4. Petersson M, Feresiadou A, Jons D, et al. Patient-reported symptom severity in a nationwide myasthenia gravis cohort: cross-sectional analysis of the Swedish GEMG study. Neurol. 2021;97:1382-1391. doi:10.1212/WNL.0000000000012604.