Leveraging AI to characterize the real-world experience of anxiety and fear during the myasthenia gravis diagnosis journey



Poster Number: V414


Raghav Govindarajan, HSHS Medical Group Multispecialty Care - St. Elizabeth’s, Rachelle Rodriguez, Janssen Global Services, Commercial Data Science, Zia Choudhry, Janssen Scientific Affairs, LLC, Caroline Brethenoux, Human Dot Plus, Jacqueline Pesa, Janssen Scientific Affairs, LLC, Sindhu Ramchandren, Janssen R&D, LLC, Kavita Gandhi, Janssen Global Commercial Strategy Organization, Kristin Heerlein, Janssen Global Services, Medical Affairs, Nizar Souayah, Rutgers NJMS - Department of Medicine

Background: Individuals with Myasthenia Gravis (MG) have a higher prevalence of anxiety compared to the general population in the United States.[1,2]

Objective: To understand anxiety and fear emotional experiences and triggers during the pre-diagnosis phase of MG.

Methods: A research study was conducted using a proprietary AI-powered methodology to examine English-language public-domain online conversations from message boards, topical sites, social networks, and blogs from August 2022–August 2023.

Results: Among MG-related posts identified (n=9901), 21% described the pre-diagnosis journey regarding their emotions (n=2093). About half (48%) expressed anxiety (n=1005/2093) during the phase from initial symptoms and suspecting MG to official diagnosis. Fear was expressed in 38% (n=795/2093). Three themes were identified as anxiety (n=1005) triggers: fatigue (23%), uncertainty (19%), and symptom discomfort (6%). Anxiety-associated uncertainty was further categorized into 3 sub-themes: misdiagnoses, not knowing what was happening, and not knowing why. Two themes were identified as fear (n=795) triggers: catastrophizing thoughts or fixating on the worst possible outcomes (24%) and physical impact (14%). One individual described their physical impact-related fear: “My legs get heavy, and suddenly I can’t walk. My balance is off, and I start tripping on my own feet. I’m so scared; things are getting worse”. Physical impact-related fear was further categorized by symptoms, discomfort, and fatigue. Catastrophizing thoughts included physical loss, lifestyle loss, unknown prognosis, not knowing how much their life will be affected, and how bad their symptoms will get.

Conclusions: This AI-powered research study leveraging the digital voice of patients in the pre-diagnosis phase of the MG journey showed individuals experienced fear and anxiety at higher rates than previously reported. Individuals attributed the anxiety and fear to their symptoms and uncertainty about the future. These insights could be leveraged to improve the resources available to individuals with suspected MG.

1.NIMH 2023. https://www.nimh.nih.gov/health/statistics/any-anxiety-disorder.
2.Nadali J, et al. Brain Behav. 2023;13(1):e2840.