Patient and care partner perspectives and preferences related to myasthenia gravis treatment: A qualitative study

Abstract

Background and aims: Due to the high symptom and treatment burden in myasthenia gravis (MG), understanding patient and care partner perspectives and preferences is crucial.

Methods: This study used voice analysis and virtual focus groups to understand patient and care partner experiences with MG-related symptoms, treatments, and preferences. The voice analysis via social media listening used artificial intelligence-powered tools to gather and structure public digital conversations on MG. Focus groups included people living with MG and care partners who completed a questionnaire and participated in a 1-h virtual session facilitated using a semi-structured interview guide. Qualitative data were aggregated, transcribed, and thematically analyzed.

Results: The voice analysis examined 11,554 posts from 8321 individuals, discussing MG symptoms, treatments, and burden. Of 7563 symptom-related posts, 5902 (78%) conveyed negative, 1427 (19%) neutral, and 234 (3%) positive sentiment. The most frequently mentioned symptoms were categorized as dysarthria, muscle weakness, and dysphagia. MG treatment sentiment analysis identified 6667 posts (67%) as neutral, 2887 (29%) as negative, and 350 (4%) as positive. For the focus groups, 15 individuals (12 patients and 3 care partners) completed the questionnaire and 14 participated in the virtual focus group sessions. The 15 participants who completed the questionnaire prioritized treatment convenience, symptom control for improved quality of life, and preventing potential MG crises in their current treatment. New treatment expectations included increased effectiveness, less frequent dosing, faster onset, and fewer side effects. Participants were also receptive to wearable medication delivery systems placed on the body and valued direct involvement in treatment decisions.

Conclusion: Patients and care partners are often negatively impacted by MG symptoms and value convenient and fast-acting treatments that control symptoms with minimal side effects. Considering patient preferences may help optimize treatment decisions and improve patients' overall well-being and satisfaction in their care.

Keywords: myasthenia gravis; patient perspective; patient preference; symptoms; treatment.

Figure 1

Overall framework for the real‐world voice analysis.

Figure 2

Top MG‐related discussion themes identified in the voice analysis out of a total of 11,554 distinct posts. Note that patients may have discussed more than one theme. MG, myasthenia gravis.

Figure 3

Symptom burden. MG symptoms were identified and categorized from the voice analysis. Note that 629 posts are not shown in this figure as they were symptom‐related posts without reference to specific symptoms. MG, myasthenia gravis.

Figure 4

Negative symptom sentiment drivers. Symptom‐related negative sentiments were categorized into five emotion‐based groups: anger, fear, disgust, surprise, and sadness. Note that posts may be characterized as having multiple combinations of sentiments and the percentages in each category may not sum to 100% due to rounding.

Figure 5

Treatment sentiment analysis. Treatments were categorized as positive, neutral, or negative sentiments. Search terms utilized encompassed variations in names and drug classes for each category in the figure. IVIg, intravenous immunoglobulin; SCIg, subcutaneous immunoglobulin.

Figure 6

Preferred emerging MG treatment administration option. Question from pre‐focus group questionnaire: For a new or emerging myasthenia gravis treatment, how would you like it to be given to you/your loved one? Please rank each option in order from 1 (most preferred) to 5 (least preferred). [Likert scale 1–5, with pictures and explanations. Scale: 1 Most preferred, 2 Somewhat preferred, 3 Neither preferred or not preferred, 4 Somewhat not preferred, and 5 Least preferred]. Includes 15 participants who completed the pre‐focus group questionnaire. Note that percentages in each category may not sum to 100% due to rounding. IV, intravenous; MG, myasthenia gravis.

Figure 7

Important factors for next possible emerging MG treatment. Question from pre‐focus group questionnaire: How important are the following factors when making decisions about a next possible myasthenia gravis treatment for you/your loved one? [Likert scale 1–5. Scale: 1 Not at all important, 2A little less important, 3 neither less important or more important, 4A little more important, and 5 Very important]. Includes 15 participants who completed the pre‐focus group questionnaire. Note that percentages in each category may not sum to 100% due to rounding. MG, myasthenia gravis.