Black, Hispanic individuals have more negative experience, concerns in myasthenia gravis

Key takeaways:

• The majority of conversations with Black patients with myasthenia gravis focused on negative aspects of disease.
• Black and Hispanic patients cited cost, insurance concerns more than Asian and white patients.

DENVER — Experiences and concerns about treatment, diagnosis, care, cost and quality of life among Black and Hispanic patients with myasthenia gravis were more negative compared with their Asian and white counterparts, according to research.

“[Myasthenia gravis] is a rare, autoantibody neuromuscular disease characterized by muscle weakness and fatigue, which imposes profound burdens on a patient, such as their quality of life,” Zia Ulhaq Chaudhry, MD, PhD, of Johnson & Johnson Innovative Medicine, told Healio in an email regarding a presentation made at the American Academy of Neurology annual meeting.

“Digital conversations can provide unprompted insights into perceptions and highlight areas of greatest concern, but there is a lack of data focusing on race/ethnicity as minority populations tend to be under-represented in [myasthenia gravis] research.”

Chaudhry and colleagues aimed to describe the various opinions, barriers and drivers related to myasthenia gravis (MG) treatment through an analysis of conversations stratified by race and ethnicity.

Their study culled data from U.S.-based public domain patient conversations focusing on MG and subsequently posted within topical websites, message boards, social networks and blogs from August 2022 to August 2023. Content contributors were patients self-identified as white, Black, Hispanic or Asian within the conversations or on public profiles.

A total of 13,163 conversations were extracted for analysis.

Researchers utilized advanced search techniques and AI-powered algorithms to extract and organize data by topics. Natural language processing was additionally employed to identify opinions, mindsets, as well as drivers and barriers towards treatment for the condition.

In a subset of 1,678 conversations that included Black patients, 67% were negative and led by issues related to misdiagnosis (23%) and impact on one’s life (23%). “Uncertain” mindsets were found to be more frequent among Black and Hispanic patients compared with white and Asian patients (47% and 55% vs. 39% and 40%).

Barriers to treatment was a frequent theme of discord among the respondents, with lack of efficacy and side effects cited as concerns across all analyzed groups. Within efficacy, the most frequently cited themes of interest were level of relief, duration of condition and symptom relief across all groups.

Data further showed that cost and insurance concerns were more prevalent among Black and Hispanic individuals compared with Asian and white individuals (15% and 18% vs. 4% and 5%).

“Patients self-identifying as Black and Hispanic more frequently discuss misdiagnosis, which is often a challenge in the [myasthenia gravis] patient journey,” Chaudhry told Healio. “Conversations highlighting cost and insurance coverage issues may point to health disparities for people of color.”