The fluctuating and unpredictable nature of the symptoms of generalized myasthenia gravis (gMG) has a substantial impact on the economic, social, and emotional well-being of patients, according to a new study published in the journal Neurology and Therapy.
Based on the answers to questions in one-on-one interviews with 28 patients with gMG, the authors of the study reported that the treatment goals of the patients included reducing fatigue and weakness, making symptoms more stable, and reducing their impact especially emotionally so that they can resume a normal lifestyle as soon as possible.
The degree of symptom fluctuation and its impact on patients’ life “may not be evident in routine clinical visits,” the researchers said. They added it is of great importance “to recognize the impact of uncontrolled symptoms on patients, their partners/caregivers, and family/friends.”
Read more about the symptoms of MG
The researchers used semi-structured interviews and in-depth, concept-elicitation interviews to collect their data.
The participants reported symptoms that affected many regions and systems in their body, including leg symptoms, fatigue, eyelid drop, difficulty breathing, and difficulty holding the head up. The symptoms that bothered the patients most were blurry or double vision, difficulty breathing, fatigue, and swallowing problems.
Each patient reported multiple symptoms, with an average of 16 symptoms affecting each patient. Almost all patients reported fluctuations in the severity of their symptoms.
The impact of disease symptoms on the physical functioning of patients included the need for the inability to participate in hobbies/sports, difficulties in performing activities of daily living, and increased planning.
All patients said their symptoms had an emotional impact on them and negatively affected their work and finances.
The patients’ treatment goals included increasing the stability of their symptoms, reducing fatigue and weakness, and minimizing the impact on their lives.
“These responses reveal the extensive effects of gMG symptoms on patients’ daily lives and highlight that symptom stability is especially important to people with gMG,” the researchers concluded.
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. Published online November 2, 2022. doi:10.1007/s40120-022-00408-x