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. 2023 Feb;12(1):107-128.
doi: 10.1007/s40120-022-00408-x. Epub 2022 Nov 2.

Understanding the Symptom Burden and Impact of Myasthenia Gravis from the Patient's Perspective: A Qualitative Study

Kristi Jackson  1 , Anju Parthan  2 , Miranda Lauher-Charest  1 , Lynne Broderick  1 , Nancy Law  3 , Carolina Barnett  4   5
Affiliations

Understanding the Symptom Burden and Impact of Myasthenia Gravis from the Patient's Perspective: A Qualitative Study

Kristi Jackson et al. Neurol Ther. 2023 Feb.

Abstract

Introduction: Patients with generalized myasthenia gravis (gMG) experience functional impairment due to MG symptoms. This study aimed to assess, from the patient perspective, the symptoms, impacts, and treatment goals of individuals diagnosed with gMG.

Methods: Semi-structured, in-depth concept-elicitation interviews were conducted with 28 individuals diagnosed with gMG in the United States.

Results: Participants reported gMG symptoms that affected many body regions and functions, with an average of 16 symptoms per participant. The most frequently reported symptoms were eyelid drooping (93%), physical fatigue (89%), symptoms affecting the legs (82%), difficulty breathing (82%), and difficulty holding head up (82%). Nearly all participants (96%) reported fluctuations in symptoms and severity. Participants' most bothersome symptoms were blurry/double vision (43%), breathing difficulties (36%), all-over fatigue (36%), and swallowing problems (29%). Impacts on physical functioning included an inability to participate in hobbies/sports, need for increased planning, and difficulties performing activities of daily living. All participants reported emotional impacts and impacts on their work and finances. Their treatment goals included reduced fatigue and weakness, improved symptom stability, and minimization of the impact of symptoms, in particular the emotional impact.

Conclusions: The fluctuating and unpredictable nature of gMG symptoms was found to have a substantial impact on patients' emotional, social, and economic well-being. Participants' goals for symptom management suggest that greater focus is needed to help them quickly resume a normal lifestyle by achieving symptom stability. Impacts of fluctuating and unpredictable symptoms are difficult to measure, but it is important to consider symptom fluctuation as well as ongoing symptomatology when making treatment decisions, and to recognize the impact of uncontrolled symptoms on patients, their partners/caregivers, and family/friends. These factors are often not reflected in burden/cost-of-illness studies.

Keywords: Burden; Fatigability; Fatigue; Impact; Myasthenia gravis; Qualitative research; Symptoms; Treatment.

Plain language summary

The aim of this study was to understand—from the patient’s point of view—the range of generalized myasthenia gravis (gMG) symptoms that they experience, which symptoms bother them most, and which symptoms have the greatest impact on everyday life, as well as patients’ treatment goals. Researchers asked these questions in one-on-one interviews with 28 people in the US who have gMG. Study participants reported living with symptoms that come and go, and are sometimes severe, making it difficult to lead a normal life. The most frequently reported symptoms were eyelid drooping (reported by 93% of study participants), physical fatigue (89%), symptoms affecting the legs (82%), difficulty breathing (82%), and difficulty holding head up (82%). The symptoms that bothered patients most were difficulties with vision (43%), problems breathing (36%), all-over fatigue (36%), and trouble swallowing (29%). Participants reported that gMG symptoms affected physical functioning, making it hard to participate in hobbies/sports, increasing the amount of planning needed to conduct their daily lives, and hindering their ability to do day-to-day activities (like driving, eating, and bathing). All participants reported that they were affected emotionally, and that the symptoms of gMG impacted their ability to work and their financial well-being. Participants’ treatment goals included reducing fatigue and weakness, making symptoms more stable, and reducing the impact of symptoms, particularly emotional impacts. 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.

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Figures

Fig. 1
Fig. 1
Summary of interview structure. gMG generalized myasthenia gravis
Fig. 2
Fig. 2
Body areas affected by generalized myasthenia gravis, as reported by study participants
Fig. 3
Fig. 3
Most bothersome myasthenia gravis symptoms and affected body regions, as reported by study participants. Participants were asked to identify their top three most bothersome symptoms or body regions and could nominate a symptom, a body region, or both when they identified the experiences that were most bothersome. Number of patients reporting a symptom as one of their top three most bothersome is shown in brackets above the corresponding bar
Fig. 4
Fig. 4
Impacts of generalized myasthenia gravis symptoms, as reported by study participants. ADL activity of daily living, IADL instrumental activity of daily living
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