Myasthenia Gravis Negatively Impacts Patients and Care Partners Through Clinical, Financial Burdens

Given its rarity, myasthenia gravis (MG) is a poorly understood disease. The chronic, autoimmune muscular disorder can impact individuals of any age and affect multiple aspects of one’s livelihood. Two recently published studies have attempted to gain a better understanding of the disease on multiple fronts; in one, patients’ emotions surrounding their treatments and their symptom burden were analyzed, while another examined the societal and economic burden of MG in 3 European countries.^1,2

Myasthenia gravis can lead to serious physical effects. | Image Credit: © luchschenF | stock.adobe.com

Treatments such as intravenous immunoglobulin (IVIG), rituximab, and plasma exchange are oftentimes employed to treat the unpredictable symptoms that stem from MG. By inactivating immune mediators and modulating the body’s immune response, IVIG is thought to achieve therapeutic effects in patients with MG. However, patients have variable tolerability, responses, and financial stability, complicating efforts to ensure patients are cared for.³

Researchers sought to explore patient and care partner preferences and concerns regarding MG treatments and understand their emotional perspectives around treatment. Through both a targeted social media analysis and patient enrollment in focus groups, the investigators were able to gain a wealth of information on patient attitudes in the MG space.¹

Patients typically took to social media to discuss MG symptoms and treatments and their disease burdens. Among posts related to symptoms, 78% expressed negative sentiments; the most mentioned symptoms were difficulty speaking, muscle weakness, difficulty eating, and trouble with eating. Interestingly, the negative sentiment did not carry over to treatment-related posts, with 67% of those being characterized as a neutral sentiment and 29% as negative sentiment.¹

Immunomodulating agents, such as IVIG, were one of the most discussed treatments for MG on social media. 64% of posts expressed a neutral sentiment towards such treatments, while 28% had a negative sentiment and 8% had a positive sentiment. The most discussed form of treatment was steroidal therapy; 57% of posts surrounding it had a negative sentiment, by far the highest proportion of the treatments listed.¹

Moving to the focus group, a questionnaire given prior to enrollment allowed enrollees to identify the 3 most important treatment attributes for them. These were determined to be preventing an MG crisis, controlling MG symptoms, and reducing treatment side effects. Furthermore, the most concerning aspects of their current or most recent treatment were how their MG symptoms would be managed (87%) and the treatment’s effectiveness (87%).¹

When dealing with burdensome treatments for rare diseases, cost can be another factor. Treatments such as IVIG are expensive for many patients, and when combined with potentially inadequate disease control and side effects, leads to high health care resource utilization (HCRU) and high overall health care costs compared with the general populace.²

In an investigation of health and social care registries in Denmark, Finland, and Sweden—3 countries with high-quality, universal health care—researchers aimed to analyze the direct, indirect, and total costs for patients with MG, as well as explore the association between severity of disease and other factors driving cost burden.²

Findings indicated that high average costs were a major burden for patients across the 3 countries, with many patients having inpatient periods that drove the costs. Patients with very severe disease faced the largest mean annual total costs; direct costs increased as disease severity worsened. Notably, the comorbidities that had the strongest association with higher costs included severe infections and mental or behavioral disorders.²

It is essential that pharmacists, clinicians, and all members of a patient’s care team work to evaluate a patient’s risk for treatment complications. Therapies such as IVIG are effective in treating MG and myasthenic crisis, but each patient must be informed on the potential side effects of IVIG or any other treatment for MG—the resolution of their symptoms without additional burdens should be prioritized.

REFERENCES

1. Yung M, Narayanaswami P, Pesa J, et al. Patient and care partner perspectives and preferences related to myasthenia gravis treatment: A qualitative study. Health Science Reports. 2024;7(9):e70081. doi:10.1002/hsr2.70081

2. Piehl F, Vissing J, Mehtälä J, et al. Economic and societal burden of myasthenia gravis in Denmark, Finland, and Sweden: A population-based registry study. Euro Journ Neuro. 2024:e16511. doi:10.1111/ene.16511

3. Antrim A. Study finds IVIG, therapeutic plasma exchange have comparable efficacy for neurological disorders. Pharmacy Times. Published October 6, 2023. Accessed October 17, 2024. https://www.pharmacytimes.com/view/study-finds-ivig-therapeutic-plasma-exchange-have-comparable-efficacy-for-neurological-disorders