Table_1_The economic burden of individuals living with generalized myasthenia gravis and facing social determinants of health challenges.DOCX

ObjectiveBetter understanding the impact of social determinants of health (SDOH) barriers from the patient perspective is crucial to improve holistic patient support in generalized myasthenia gravis (gMG), a rare autoimmune disorder with high disease and treatment burden. The objective of this study was to identify economic challenges experienced by individuals living with gMG and SDOH barriers to better address current unmet needs.MethodsAdults (18–75 years) living with gMG and experiencing SDOH barriers in the United States were recruited to a mixed-methods study including qualitative interviews and a web-based quantitative survey. Quotas were implemented to include a balanced spread of baseline demographic categories including insurance type, living environment, and employment status among the study sample. Direct and indirect economic challenges were identified by degree of concern.ResultsThe survey was completed by 38 individuals living with gMG, the majority of whom were enrolled in public insurance and not employed. The most commonly reported major economic concerns were managing funds for emergency care (66%), loss of income (61%), and non-medical expenses (58%), highlighting the diversity of economic challenges. Individuals who were using public insurance plans, living in non-urban environments, and unemployed experienced pronounced challenges around managing non-medical costs and accessing government assistance.ConclusionBoth direct and indirect costs were emphasized as major concerns among individuals living with gMG and SDOH barriers. Increasing access to relevant, personalized, and holistic resources, including care management, should be prioritized to improve disease management and outcomes for individuals living with gMG.</p

Reagents and antibodies for Tfh panel.

Reagents and antibodies for Tfh panel.</p

Racial disparities in the distribution of Tfh cells.

A) Overall Tfh frequencies were similar between African-Americans and Caucasians. However, race related differences were observed in certain Tfh cell subsets including B, C) decreased frequencies of Tfh1 cells in African-Americans at all age ranges, and D, E) increased Tfh17 frequencies in African-Americans, a difference that was observed in all age groups. In C and E, Caucasians are represented by blue bars and African-Americans by orange bars.</p

Age related changes in selected T cell populations.

A, B) A decrease in naïve CD4+ and CD8+ T cells with advancing age (C, D) corresponds with an increase in central memory CD4+ and CD8+ T cells. E) Effector memory CCR4+ Tregs increase with age. Tregs, identified by gating on CD4+CD25+CD127low cells were compared based on four age groups.</p

Example of web-based data visualization tool.

Researchers have the ability to select reference ranges for flow cytometry panels of interest by age, gender, and race filters. This tool will calculate summary statistics on the selected population and the data may be downloaded for study. Links to cell ontology are present when applicable, and the gating strategies are available. Gating strategies and summary tables are also available.</p

Reagents and antibodies for HIPC panels.

Reagents and antibodies for HIPC panels.</p

Racial disparities in the distribution of innate cells.

A) Classical (CD14+CD16-) monocytes were decreased and B) non-classical (CD16+CD14-) were increased in African-Americans compared with Caucasians. C) The increase in CD16+CD14- populations in African-Americans was present in all age groups. D) In each age group, the frequency of CD14+ monocytes was higher in Caucasians compared to African-Americans. E) CD16+CD56- NK cell frequencies were increased in African-Americans compared to Caucasians, and the difference became larger in the older age groups. In C, D, and E, Caucasians are represented by blue bars and African-Americans by orange bars.</p

Identification of cell subsets in the blood.

T, B, and innate cells were identified according to HIPC guidelines. The Tfh panel is not part of the HIPC guidelines and markers were selected by the study team based on published medical literature.</p

Study population demographics.

Study population demographics.</p

Forest plot summarizing reference ranges for major lymphocyte subsets in the overall population.

References are shown for CD3+ T cells, CD4+ T cells, CD8+ T cells, Tfh cells, overall B cells, monocytes, NK cells, Tregs, and dendritic cells. Data are presented as means with 95% reference intervals calculated by non-parametric bootstrap.</p