2023 American Academy of Neurology Abstract Website

Objective:

To explore patient experiences with treatments for Myasthenia Gravis (MG) via digital conversations with a focus on corticosteroids and Immunoglobulin (Ig) therapies.

Background:

MG is a rare, chronic autoantibody disease that requires long-term treatment and is associated with high disease and treatment burden and reduced quality of life.

Design/Methods:

One year (8/2021-8/2022) of conversations focused on MG and treatments, specifically corticosteroids and Ig, originating from US internet protocol addresses were tagged based on self-identification in the conversations or on public profiles. Advanced search techniques together with artificial intelligence powered algorithms were used to extract and organize data by topics into a large, unstructured dataset. Sentiment analysis via natural language processing was conducted to categorize conversations as positive, negative or neutral and analyzed to derive the most frequent drivers of each sentiment.

Results:

Among 13,234 conversations extracted from topical sites, message boards, social networks and blogs, 19% were related to MG treatments. Most conversations had negative sentiment (59%), 39% were neutral, and 1% were positive. Among corticosteroid and Ig treated individuals, respectively, posts with negative (69% and 61%) and neutral (31% and 39%) sentiments were the norm, with virtually no “positive” conversations. “Treatment issues” was the dominant driver of negative sentiment among the corticosteroid and Ig related conversations. When posting about “barriers to treatment”, corticosteroid related conversations were most frequently about lack of effectiveness and side effects, while patients discussing Ig treatments most frequently focused on side effects and cost/insurance.

Conclusions:

Digital conversations reveal a high degree of negativity and concern related to MG treatment, specifically, corticosteroids and Immunoglobulin therapies. There is a need for new treatments that provide effectiveness through symptom control with few side effects. By capturing patient voice, this study reinforces limitations of current treatments and highlights the need for improved options for individuals with MG.