Assessing Efgartigimod (VYVGART™) Social Media Posts in Generalized Myasthenia Gravis to Understand Patient, Caregiver, and Health Care Professional Sentiments

Abstract

Introduction

Myasthenia gravis (MG) is a chronic autoimmune neuromuscular disorder characterized by fluctuating muscle weakness (ocular, bulbar, limb, and respiratory). Efgartigimod (VYVGART), a first-in-class neonatal Fc receptor antagonist, was approved for treatment of generalized MG (gMG). This study aimed to explore real-world sentiments, wherein in sentiments refer to real-world perceptions expressed by patients, caregivers, and healthcare professionals (HCPs) on VYVGART and VYVGART Hytrulo, through structured social media analysis.

Methods

This social media listening study was designed to collect posts mentioning VYVGART and VYVGART Hytrulo for gMG using predefined keywords from social media platforms across the globe. Organic English-language posts from several platforms, such as Reddit, X (formerly Twitter), Facebook, Forums, Review, and Tumblr etc., were analyzed for the timeframe August 1, 2021 to September 30, 2024. Posts were categorized into themes, namely “brand awareness,” “treatment access,” “treatment experience,” and “treatment support.”

Results

A total of 1046 posts (USA 9%, Europe 6%, Unknown 85%) contained relevant information; 1015 posts were related to VYVGART and 55 posts were related to VYVGART Hytrulo. Most posts focused on treatment experience (593 posts) and brand awareness (402 posts). Overall sentiments towards VYVGART and VYVGART Hytrulo were positive in 49%, 30%, and 20% of patient, caregiver, and HCP posts, respectively. Patient posts expressed optimism about initiating treatment. There were fewer caregiver and HCP discussions and these were predominantly neutral.

Conclusion

These findings suggest positive real-world perceptions of VYVGART and VYVGART Hytrulo among patients in improving symptoms and health-related quality of life.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1007/s40120-026-01000-3.

Key Summary Points

Why carry out this study?

VYVGART (efgartigimod) is a first-in-class neonatal Fc receptor antagonist used for treating patients diagnosed with gMG.

This social media analysis captured the patient (85% of posts), caregiver (2.8% of posts), and HCP (12.2% of posts) sentiments regarding VYVGART and VYVGART Hytrulo treatment of gMG.

The study included posts in English language from across the globe from social media platforms such as Reddit, X, Facebook, Forums, etc.

What was learned from the study?

The analysis revealed 49% positive sentiment in the patient posts, reporting improvement in gMG symptoms and quality of life.

Caregivers also echoed the same sentiments as patients while the HCP sentiments were largely neutral.

Introduction

Myasthenia gravis (MG) is a rare, chronic autoimmune neuromuscular disorder characterized by fluctuating skeletal muscle weakness resulting from autoantibody-mediated disruption of neuromuscular transmission [1, 2]. Clinical manifestations commonly include ocular symptoms such as ptosis and diplopia, with progression to generalized weakness affecting bulbar, limb, axial, and respiratory muscles [1–3]. Weakness typically worsens with repetitive muscle use and exercise; fatigue varies over the course of the day [1]. MG is the most common disorder of the neuromuscular junction [2] with a prevalence of 10 to 20 cases per 100,000 population [2]. It predominantly affects younger women (20 to 40 years old) and older men [4]. The first-in-class neonatal Fc receptor antagonist efgartigimod (VYVGART) was approved in the USA in December 2021 [5].

Social media refers to online social networking platforms, such as X (formerly Twitter), YouTube, Reddit, Instagram, etc., that enable users to share real-time content [6]. Considering the broad reach and widespread adoption, social media offers a unique opportunity to capture unfiltered and unprompted patient, caregiver, and healthcare professionals (HCP) experiences and sentiments about treatments, health-related quality of life (HRQoL), cost burdens, and insurance challenges, etc., that can complement traditional data sources [6, 7]. Evaluating social media posts provides deeper qualitative insights to guide future gMG research.

This study aimed to categorize and quantify VYVGART™ (argenx) and VYVGART Hytrulo (efgartigimod alfa and hyaluronidase-qvfc) social media sentiments (argenx) in gMG across patients, caregivers, and HCPs. It also identified key subtopics and evaluated sentiments to better understand trends and experiences across global stakeholder groups.

Methods

Study Design

This social media listening study [8, 9] was conducted to capture posts mentioning VYVGART and VYVGART Hytrulo in gMG from social media platforms across the globe. Social media posts from several platforms including but not limited to Reddit, X, Facebook, Forums, Review, and Tumblr were captured. Relevant posts (excluding inappropriate content, advertisements, or non-specific discussions) made from August 1, 2021 to September 30, 2024 (38 months) in the English language were included. Posts from non-medical stakeholders (e.g., marketers), inappropriate content (posts including offensive or inappropriate material), irrelevant discussions (posts with keywords but lacking meaningful context for analysis), and posts from private groups were excluded. Ethics committee approval was not needed for this study, as it did not involve any interventions on human participants. Adverse events or product complaints reported in the posts were recorded and shared with argenx.

Social Media Data Mining

Keywords related to brand names (e.g., VYVGART, VYVGART Hytrulo/Vyvdura), clinical trials, and gMG terms were identified. Three keyword types were defined: independent, primary, and secondary. Independent keywords (e.g., VYVGART, efgartigimod, VYVGART Hytrulo, Vyvdura, efgartigimod alfa, efgartigimod alfa-fcab, hyaluronidase-qvfc) were used individually, while primary (Adapt, Adapt-SC) and secondary keywords (e.g., Trial, argenx, Zai, Hytrulo, Seron, myasthenia gravis, gMG) were combined to refine the search. Posts were collected using the Brandwatch tool, excluding advertisements, irrelevant content, and non-specific discussions. The extracted posts were filtered for gMG indication by using keyword-based filters and manual validation (Fig. 1).

Fig. 1.

Structured framework for extracting relevant posts

Data Extraction and Filtration

ZS Associates GenAI algorithms (GPT-5 via Microsoft Copilot) were used as a preliminary content-screening and triaging aid. All stakeholder classification, topic assignment, and sentiment assessment used in the final analysis were reviewed and validated by trained analysts. Inter-rater reliability was assessed between independent human analysts using a double-coded subset of posts and quantified using Cohen’s kappa (0.93) indicating almost perfect agreement. Complex linguistic features commonly observed in social media posts, including sarcasm, irony, ambiguity, and mixed sentiments, were addressed through manual, context-based review by trained analysts rather than keyword-based interpretation. Sentiment and topic assignment were based on the overall narrative meaning, tone, phrasing, and surrounding context of each post. Posts containing both favorable and unfavorable views were classified under both positive and negative sentiment categories when both perspectives were materially represented. Similarly, posts discussing multiple themes were assigned to all applicable topics. In ambiguous cases where one viewpoint was not substantively developed, the dominant sentiment was assigned. To improve consistency, a subset of posts was independently reviewed by a second analyst. Disagreements between analysts were resolved through consensus; where consensus could not be reached, the final classification was determined by a senior review/subject matter expert. AI-generated outputs were used only as a preliminary triaging aid and were not used as the final analytic classification [10]. Irrelevant discussions/posts lacking the gMG indication, posts lacking information about VYVGART or VYVGART Hytrulo, and posts on non-indication topics were excluded. A combination of generative AI models and human-in-the-loop validation (ZS experts) were used to analyze each post, identifying drug-related insights and sentiments. The posts were categorized into four broad themes, namely “brand awareness,” “treatment access,” “treatment experience,” and “treatment support,” with subtopics offering deeper insights into stakeholder experiences (each post can be classified into more than one theme) (Fig. 1). The themes were defined as follows: brand awareness related posts referred to recognition, familiarity, discussion, or informational mention of the brand, including knowledge sharing, treatment consideration, regulatory updates, and clinical trial discussions. Treatment access-related posts referred to discussion of obtaining treatment, including cost, insurance coverage, reimbursement, affordability, availability, prescribing pathway, or healthcare system barriers. Treatment experience-related posts focused on patient or caregiver-reported experience with therapy, including perceived effectiveness, side effects, ease of use, treatment burden, adherence, infusion scheduling, and quality of life impact. Treatment support-related posts referred to discussion of resources or assistance related to treatment use, including healthcare provider guidance, manufacturer support, clinic/hospital support, and community or peer support. Further, subtopics were used within each broad theme to allow more granular characterization of discussion content while maintaining consistency in top-level categorization. Each post was analyzed and assigned a sentiment namely positive, negative, and neutral. Both theme and sentiment assignment were done by trained analysts on the basis of overall contextual interpretation of each post. Posts expressing favorable experiences or perceptions, such as treatment effectiveness, symptom improvement, improved quality of life, ease of access, or successful steroid reduction, were assigned as positive. Posts expressing dissatisfaction, challenges, or concerns, such as difficulty accessing treatment, perceived lack of efficacy, adverse events, financial barriers, or payer-related obstacles, were assigned as negative. Posts that were primarily informational, descriptive, or inquisitive and did not communicate a clear favorable or unfavorable stance were assigned as neutral. Posts containing both favorable and unfavorable views within the same post were classified under both positive and negative.

Results

Volume and Demographics of Overall Posts

A total of 4214 posts were identified, of which 1046 posts contained relevant information—95% (n = 1015) related to VYVGART, and 5% (n = 55) related to VYVGART Hytrulo, a single post could include both products. Among these, 85% (n = 889) were from patients, 12.2% (n = 128) were from HCPs, and 2.8% (n = 29) from caregivers (Fig. 2). Geographically, 9% (n = 94) of posts originated from the USA, 6% (n = 63) from Europe, and 85% (n = 889) were from unknown locations. In terms of demographics, 10% (n = 105) of the posts were from male individuals, 11% (n = 115) were from female individuals, and for 79% (n = 826) of posts the sex of the poster was unknown.

Fig. 2.

Filtration of posts. *Posts excluding inappropriate content, advertisements, or non-specific discussions. gMG generalized myasthenia gravis, HCP healthcare professional

The volume of posts increased after quarter (Q) 4 2021, following the launch of VYVGART for gMG in the USA. By Q1 2022, HCPs and patient posts discussed Food and Drug Administration (FDA) approval, treatment recommendations, and seeking shared experiences. After Q1 2023, posts from patients increasingly mentioned experiences with VYVGART. After the launch of VYVGART Hytrulo in Q2 2023, discussions expanded to include this new formulation (Fig. 3).

Fig. 3.

Trend line based on overall posts for VYVGART and VYVGART Hytrulo. Q quarter

Topic Volume and Sentiments of Overall Posts

Among the four main topics—brand awareness, treatment access, treatment experience, and treatment support—patients posted most frequently about treatment experience (66.7%, 593 posts) followed by brand awareness (45.2%, 402 posts), treatment access (17.7%, 157 posts), and treatment support (3.5%, 31 posts). Caregiver posts were limited in number and mainly focused on brand awareness (51.7%, 15 posts) and treatment experience (48.3%, 14 posts), with a few posts discussing treatment access (13.8%, 4 posts) and none on treatment support. HCPs primarily posted about brand awareness (96.1%, 123 posts), followed by treatment experience (8.6%, 11 posts) and treatment access (3.9%, 5 posts); No HCP posts discussed treatment support (Figs. 4, 5, 6). In terms of sentiments, nearly half of the patient posts had a positive sentiment (49%) towards VYVGART and VYVGART Hytrulo, followed by 30% of caregiver posts and 20% of HCP posts. The majority of the HCP posts had a neutral sentiment (78%), followed by caregiver posts (43%) and patient posts (24%). Negative sentiment was observed in 27% of posts from both patients and caregivers, and 2% of HCP posts.

Fig. 4.

Perceptions from patient sentiments (889 posts). (i) Patient treatment experience. (ii) Patient perceptions on treatment access, brand awareness, and treatment support. A post can be tagged under multiple topics, subtopics and may carry multiple sentiments, leading to total counts exceeding 100%. Therefore, topics and subtopics are not mutually exclusive. HCP healthcare professional, QoL quality of life

Fig. 5.

Perceptions from caregiver sentiments (29 posts). A post can be tagged under multiple topics, subtopics and may carry multiple sentiments, leading to total counts exceeding 100%. Therefore, topics and subtopics are not mutually exclusive. QoL quality of life

Fig. 6.

Perceptions from healthcare professional sentiments (128 posts). A post can be tagged under multiple topics, subtopics and may carry multiple sentiments, leading to total counts exceeding 100%. Therefore, topics and subtopics are not mutually exclusive. FDA Food and Drug Administration, RCT randomized controlled trials, QoL quality of life

Perceptions from Patient Posts

Among the 889 patient posts, 97% (n = 862) were related to VYVGART and 5.7% (n = 51) to VYVGART Hytrulo. Most posts (94%) were from unknown locations and around 6% of the posts were from the USA. Post volume over the past 3 years averaged approximately 70 posts per quarter, with a peak of 153 posts observed in a single month (Fig. 3).

Brand Awareness

Overall, 45.2% of patient posts (n = 402) referenced brand awareness, of which 44.2% (n = 393) related to VYVGART and 1.8% (n = 16) to VYVGART Hytrulo. Patients expressed excitement about VYVGART as a new treatment option for gMG and considered it a promising alternative since their ongoing treatments had become less effective, caused side effects, faced insurance coverage challenges, or infusion-related issues. Patients actively sought peer opinions and shared experiences, discussing VYVGART’s mechanism, dosage, and comparisons with other treatments. Some individuals were initially hesitant to start treatment with VYVGART because of concerns about side effects or insurance approval. However, many seriously considered the treatment after consulting with their neurologists. There was also interest in VYVGART as a potential treatment for other conditions such as long-COVID, postural orthostatic tachycardia syndrome, and chronic inflammatory demyelinating polyneuropathy (Fig. 4ii).

Treatment Access

A total of 17.7% (n = 157) patient posts referred to access to treatment, out of which 16.4% (n = 146) posts were for VYVGART and 2.2% (n = 20) posts were for VYVGART Hytrulo. A subset of patient posts reported insurance-related challenges with VYVGART (4%, n = 37). For some, insurance did not cover VYVGART Hytrulo, or the approval was complex; high out-of-pocket costs were also frequently mentioned. Patients compared VYVGART and VYVGART Hytrulo on the basis of their administration methods (60–90 s subcutaneously) versus VYVGART’s intravenous infusion and requiring monitoring. Some patients shared that their neurologists successfully initiated VYVGART while others mentioned reluctance from HCPs as they preferred other treatments (eculizumab or ravulizumab). Notably, patients who are seronegative expressed an interest in accessing VYVGART but faced insurance denials due to the treatment not being approved (Fig. 4ii).

Treatment Experience

A total of 67% (n = 593) patient posts referred to treatment experience, out of which 64% (n = 572) posts were for VYVGART and 4.7% (n = 42) posts were for VYVGART Hytrulo. Patients generally reported a positive experience with VYVGART; the posts mentioned considerable improvements in gMG symptoms, such as muscle weakness, breathing difficulties, and vision issues. They also noted increased strength, reduced fatigue, and better daily functioning with VYVGART and VYVGART Hytrulo. Further, both VYVGART and VYVGART Hytrulo were well recognized among patients with gMG. VYVGART and VYVGART Hytrulo were preferred as a treatment option due to their effectiveness and fewer side effects in comparison to existing treatments such as intravenous immunoglobulin (IVIG), mycophenolate mofetil, eculizumab, and ravulizumab. Some patients experienced severe issues such as vision issues and breathing difficulty with VYVGART. Nonetheless, VYVGART enabled patients to reduce their reliance on steroids such as prednisone, minimizing steroid-related side effects. Insurance approval challenges were frequently shared, particularly during transitions from other treatments (e.g., IVIG, mycophenolate mofetil, plasma exchange [PLEX]). The weekly hour-long infusion schedule for VYVGART was considered manageable and was considered convenient in comparison to IVIG by most of the patients. However, a few patients reported the dosing frequency to be burdensome with patients referring to difficulty in venous access or experiencing post-infusion fatigue. Delays in insurance approvals often extended treatment gaps beyond the recommended 4-week cycle, leading to symptom recurrence. Patients shared mixed experiences in terms of support from healthcare teams in managing treatment schedules and monitoring progress. In comparison, patients found VYVGART Hytrulo to be more convenient for managing gMG, offering a subcutaneous administration that eliminates vein access issues and reduces administration time to just 60–90 s (Fig. 4i).

Treatment Switch and Side Effect Profile

A total of 9.8% (n = 87) discussed switching to VYVGART (9%, n = 80) and VYVGART Hytrulo (0.8%, n = 7) from prior treatment such as IVIG, VYVGART, mycophenolate mofetil, PLEX, eculizumab, pyridostigmine, rituximab, ravulizumab, azathioprine, and rozanolixizumab. The reasons were attributed to better side effect profile, ineffective previous treatments, quicker and less frequent administration, positive experiences by fellow patients, and insurance-related challenges. Conversely, 3.5% (31 posts) described switching from VYVGART to IVIG, ravulizumab, PLEX, eculizumab, underwent thymectomy, zilucoplan, and chimeric antigen receptor therapy. These switches were primarily due to infusion-related side effects, lack of improvement, concerns over administration burden, and symptom flare-ups.

Out of 889 patient posts, 9.7% (86 posts) mentioned side effects related to VYVGART, 9% (80 posts) related to VYVGART, and 1.1% (10 posts) to VYVGART Hytrulo. Some patients reported severe reactions, including shortness of breath, blurry vision, and urinary issues. Other notable side effects frequently mentioned across both treatments were headache, nausea, and fatigue. Among VYVGART-related posts, vision issues (19 posts, 2.1%) and breathing difficulty (18 posts, 2%) were frequently mentioned and led a few patients to discontinue the treatment. For VYVGART Hytrulo, injection site reactions 1% (9 posts) were the most frequently reported side effect.

Health-Related Quality of Life and Brand Comparison

Out of 889 patient posts, 7.6% (68 posts) mentioned relevant HRQoL effects, including 7.1% (63 posts) related to VYVGART and 0.8% (7 posts) related to VYVGART Hytrulo. Patients reported significant improvements in physical strength, enabling them to engage in previously challenging activities such as walking on the beach, participating in sports, and performing household chores. They also highlighted an enhanced ability to complete daily tasks, such as eating their favorite foods without difficulty and taking part in family activities. Representative terms or phrases, synthesized from patients’ social media posts, that reflect positive HRQoL outcomes: “getting stronger,” “walking/strengthening legs,” “climbing stairs,” “pre-MG condition,” “started traveling,” “doing anything and everything,” “being normal,” “cooking and eating,” “sleeping well,” “grateful for VYVGART,” and “magic medication.” However, a few patients (1.5% [13 posts]) described negative experiences, such as loss of strength in their legs, leading to mobility challenges and difficulties in daily activities, including an inability to swallow properly, following treatment with VYVGART and VYVGART Hytrulo.

A total of 2.7% (24 posts) mentioned both VYVGART and VYVGART Hytrulo and 1.8% (16 posts) reported switching from VYVGART to VYVGART Hytrulo. Patients noted that VYVGART provided quick symptom relief, often within a few days, whereas with VYVGART Hytrulo, the time for effects ranged between 7 and 10 days, but the relief lasted longer. Intravenous infusions with VYVGART were considered time-consuming, whereas VYVGART Hytrulo could be administered quickly as an injection at home, with no post-injection observation required (Fig. 4i).

Treatment Support

A total of 3.5% (31 posts) patient posts referred to treatment support, out of which 3.3% (29 posts) were for VYVGART and 0.2% (2 posts) were for VYVGART Hytrulo. Patient posts highlighted mixed experiences with HCPs; some were happy with the treatment, whereas others expressed frustration with doctors who did not fully understand or recognize their gMG symptoms, leading to challenges in receiving appropriate treatment and affecting the decision-making process regarding the use of VYVGART. Few patients were dissatisfied because of lack of information on mid- and long-term side effects and expressed the need for improved transparency and communication (Fig. 4ii).

Perceptions from Caregiver Posts

Out of 29 caregiver posts, 96.6% (28 posts) were for VYVGART and only 3.4% (1 post) were for VYVGART Hytrulo. Most of the posts (84%) were from unknown geography, while 14% were from the USA and 2% from Europe. There was an increase in posts for VYVGART and VYVGART Hytrulo, respectively, after their US launch. The caregivers’ posts noted that they actively sought feedback, shared recommendations, and discussed plans to start VYVGART for their loved ones, using online discussions to better understand and prepare for the treatment journey. Further, they reported considerable improvements in their loved ones’ symptoms and HRQoL with VYVGART. Some caregivers noted a decrease in effectiveness after infusion cycles and occasional side effects such as pain. The caregivers discussed switching to VYVGART as life-changing for many, while others continued using steroids or reverted to previous treatments when results were not as expected. Some caregivers sought information about VYVGART specifically for patients with anti-acetylcholine receptor (AChR) antibody-positive gMG. A few caregivers expressed concerns about the high cost of the treatment and eligibility issues, particularly regarding its use for patients with seronegative gMG (Fig. 5).

Perceptions from HCP Posts

A total of 128 posts were attributed to HCPs, of which 97.7% (125 posts) were for VYVGART and 2.3% (3 posts) were for VYVGART Hytrulo. In terms of geography, 42% of HCP posts were from Asia, Europe, Africa, and North America and 27% were from the USA. There was a noticeable increase in the volume of HCP posts after the launch of VYVGART in the USA while VYVGART Hytrulo had limited mentions. HCPs recognized VYVGART and VYVGART Hytrulo as effective treatment options for gMG mentioning the mechanism of action (Fc receptor targeting) and acknowledging it as an addition to the existing treatment landscape, including PLEX and other therapies. HCPs also discussed FDA approvals and shared updates on ongoing trials including the ones for expanded indications long-COVID and Sjögren’s syndrome, reflecting anticipation of broader therapeutic use. HCPs also mentioned the high annual cost for VYVGART ($225,000), and one HCP posted about the direct-to-consumer campaigns aimed at increasing awareness and support within the gMG community. Moreover, the posts mentioned the efficacy of VYVGART in trials and the ability to treat patients who had already received other treatments. There were also mentions regarding improvement in patients’ HRQoL. The HCP discussions were largely factual, neutral, and mentioned trial data and safety outcomes with minimal personal opinions (Fig. 6).

Discussion

This social media analysis offers valuable insights into real-world perceptions of VYVGART and VYVGART Hytrulo for gMG, capturing the diverse sentiments of patients, caregivers, and HCPs across a global digital landscape. Patients predominantly expressed positive sentiment toward VYVGART and VYVGART Hytrulo, driven by their relief from gMG symptoms and improved HRQoL with increased ability to perform daily activities, and improved strength and mobility, with many calling VYVGART and VYVGART Hytrulo life-changing (specific keywords mentioned in posts include “changed my life,” “life saver,” “game changer,” etc.) for them. They actively shared treatment experiences, with many switching from older therapies as a result of side effects or lack of efficacy. However, challenges related to insurance access, infusion burden, delays in initiating or continuing their scheduled infusions, and side effects were also reported. Caregivers, though a much smaller group, echoed patients’ positive outcomes, describing considerable improvements in their loved ones’ conditions and HRQoL, while also raising concerns about cost and access, particularly for patients who are seronegative. HCPs maintained a largely neutral and factual tone, focusing on FDA approvals, clinical efficacy, and mechanism of action. While they acknowledged VYVGART as an addition to the treatment landscape, highlighting its superior efficacy over placebo and its effectiveness in patients who were heavily pre-treated, discussions of cost and broader applicability, such as in long-COVID and Sjögren’s syndrome, highlighted interest in future therapeutic potential.

In the present study, the posts were categorized into broad themes, namely brand awareness, treatment access, treatment experience, and treatment support. Subtopics provided deeper insights into stakeholder experiences. The highest number of patient posts was about treatment experiences, followed by brand awareness, which can be understood through the desire for patients to share their experience, which can in turn lead to brand awareness [11]. The majority of the relevant posts identified in the present study were from patients, which may be attributed to patients seeking support and validation regarding experiencing similar challenges, also wanting to discuss newer treatments and side effects, actively sharing their experiences [12]. Further, a higher volume of posts was about VYVGART compared to VYVGART Hytrulo, which may be due to VYVGART being on the market longer than VYVGART Hytrulo [5, 13].

Furthermore, nearly half of the patient posts had a positive sentiment towards VYVGART and VYVGART Hytrulo, with patient posts stating considerable improvement in symptoms. The efficacy of VYVGART has been established in the ADAPT trial (NCT03669588) and ADAPT+ trial (NCT03770403) that reported efgartigimod (VYVGART) was generally safe and demonstrated clinically meaningful improvements in MG–Activities of Daily Living scores and HRQoL measures in patients with AChR+ gMG [14]. Real-world sentiments support trial evidence, suggesting that patient-perceived effectiveness aligns with clinical outcomes [15]. Concerns regarding insurance approvals, out-of-pocket costs in case insurance did not cover the treatment, and side effects were frequently highlighted in the patient posts. These findings are consistent with a previous sentiment analysis study of digital conversations on MG, which analyzed 13,234 conversations, out of which 1382 conversations discussed barriers to treatment, 36% focused on side effects and 10% were related to costs and insurance [12]. This underscores the ongoing real-world challenges patients face despite the availability of newer therapies [12]. Patient posts also referred to improved HRQoL with VYVGART and VYVGART Hytrulo aligning with findings from ADAPT trial that noted positive effects on HRQoL as early as the first week of treatment [16]. Treatment switches, particularly from VYVGART to VYVGART Hytrulo, were often driven by a more convenient administration procedure of VYVGART Hytrulo (subcutaneous vs intravenous infusion). VYVGART Hytrulo offers similar efficacy [17] with the ease of administration, as its subcutaneous administration can help avoid common side effects such as infusion reactions [13].

Furthermore, patients reported mixed perceptions of HCP support and understanding of their symptoms. Considering this unmet need of lack of understanding and satisfaction with treatment from a patient’s perspective, patient support programs can help bridge the gap and make patients feel more empowered to discuss their concerns with HCPs [18].

Looking at the caregiver posts, although limited, most of the posts were related to them seeking recommendations, feedback on the treatment, and discussing plans regarding initiating VYVGART, which has been a trend seen in recent years where caregivers search for information and seek peer-to-peer support online [19, 20]. More targeted caregiver engagement strategies are needed to understand and support their role in treatment pathways for gMG. HCP posts, on the other hand, were largely neutral and factual, and focused on discussing trial data, mechanism of action of the drug, and did not include much about personal opinions reflecting professional caution, which could have been done to avoid influencing patients and to maintain objectivity [21].

In addition, sentiment patterns observed for brands used in other complex diseases provide context for interpreting VYVGART-related perceptions. Brand A (treatment for vasomotor symptoms) had high neutral sentiment, which may reflect limited patient-perceived benefit and minimal emotional engagement. Brand B (treatment for partial-onset seizures) showed a higher proportion of negative sentiment, suggesting a potential possible dissatisfaction with treatment or unmet expectations. Brand C (treatment for multiple myeloma) demonstrated balanced sentiment profile for positive, negative, and neutral sentiments. In contrast, a higher proportion of patient posts indicated positive sentiment toward VYVGART (49% positive sentiment), which may be attributed to its acceptance in patients relative to treatments in other therapeutic areas (30% positive sentiment across three comparators) (Supplementary section). These findings suggest a favorable perception of VYVGART in the patient community and reinforce the utility of social media as a complementary evidence source. However, it should be noted that differences in disease burden, treatment expectations, and patient demographics across gMG, VMS, partial-onset seizures, and MM may influence sentiments independently of drug performance.

Despite providing valuable insights into patients, caregivers, and HCPs the present study had certain inherent limitations due to utilizing social media data [22–25]. The age, sex, and geography for majority of the patients, HCPs, and caregivers were unknown; the majority of the posts were from Reddit, which is a platform that does not provide the sex and location information of the posts in the extracted data, therefore limiting demographic characterization and interpretation of findings across population subgroups. Moreover, sex/gender/geography-related and treatment-experience data were harvested and clustered where possible, based on user self-identification in publicly available user profiles or in the unsolicited text and description within the analyzed conversations. However, these data were unavailable for a substantial proportion of posts and therefore should be interpreted with caution. This study was confined to analyzing social media posts in English language collected through Brandwatch only, excluding posts in other languages, which limits the findings to English-language interactions. In addition, Brandwatch only captures publicly available content and cannot access posts from private groups, closed patient communities, or patient association forums. As a result, perspectives shared within these settings were not captured. The diagnosis of MG was based solely on self-reporting in digital conversations and could not be independently confirmed by a HCP. Similarly, treatment exposure, healthcare professional status, and user identities could not be verified and were inferred from publicly available profile information and conversation content, where available. As with all social media-based research, the authenticity of user identities and reported experiences could not be independently confirmed, which may introduce misclassification and reporting bias. Furthermore, individuals who discuss MG on social media may not be representative of the broader MG population, potentially limiting the generalizability of the findings. Nonetheless, this study provides an in-depth analysis of social media pertaining to gMG, VYVGART, and VYVGART Hytrulo, providing an understanding of how patients, caregivers, and HCPs perceive this treatment.

Conclusion

A standardized process was used to extract and analyze relevant social media posts through stakeholder tagging and topic classification. Of the 1046 posts analyzed, 889 (approx. 85%) were from patients, making them the primary contributor group. Patient-reported social media discussions frequently described perceived improvements in gMG symptoms and HRQoL with VYVGART and VYVGART Hytrulo. Overall, patients expressed positive sentiment on treatment effectiveness for VYVGART and VYVGART Hytrulo in comparison to existing treatment options, while also highlighting challenges related to treatment access and cost. This study demonstrated the utility of social media listening in capturing unfiltered, unprompted perspectives from key stakeholders, providing insights to guide future research and patient engagement in gMG.

Supplementary Information

Below is the link to the electronic supplementary material.

Author Contributions

Tom Hughes, Albert Whangbo, Swati Shukla were involved in study design, data collection, and interpretation. Aditya Batra, Kaushik Bhattacharya, Anshul Sharma, and Shreyas Jarmale were the project analysts. All authors contributed to the data interpretation for the results. All authors met ICMJE criteria and all those who fulfilled those criteria are listed as authors. All authors had access to the study data, provided directions and comments on the manuscript, made the final decision about where to publish these data, and approved submission to the journal.

Funding

The study, including data acquisition, analytics, and medical writing, were funded by argenx (Ghent, Belgium). The journal’s Rapid Service Fee was funded by argenx (Ghent, Belgium). The funder was involved in the study design; data collection, analysis, and interpretation of data; writing of the report; and the decision to submit the article for publication.

Data Availability

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

Declarations

Conflict of Interest

Tom Hughes is an employee of argenx. Albert Whangbo, Swati Shukla, Aditya Batra, and Shreyas Jarmale are employees and serve as paid consultants for argenx. At the time of study conduct, Kaushik Bhattacharya and Anshul Sharma were employees of ZS Associates and served as paid consultants for argenx.

Ethical Approval

Ethics approval was not required for this study, as it did not involve human participants or identifiable personal data. Adverse events or product complaints reported in the posts were recorded and shared with argenx.