Assessing VYVGART Social Media Data in Generalized Myasthenia Gravis To Understand Patient, Caregiver, and HCP Sentiment
Author(s)
Tom Hughes, BSc, PhD1, Glenn Phillips, Ph.D.2.
1Director, argenx, Boston, MA, USA, 2argenx, Boston, MA, USA.
1Director, argenx, Boston, MA, USA, 2argenx, Boston, MA, USA.
Presentation Documents
OBJECTIVES: Collect, categorize and quantify global social media posts related to VYVGART from patients, caregivers, and HCPs. Analyze positive, neutral and negative sentiment and subtopics to identify insights across stakeholders to inform future research, strategy, and tactics.
METHODS: To capture VYVGART-Hytrulo-gMG posts from social media platforms, relevant keywords were identified. Data was collected using Brandwatch, removing irrelevant content to retain meaningful discussions. Posts were categorized into stakeholder groups—patients, caregivers, and HCPs—and analyzed with ZS GenAI algorithms, followed by manual validation. Posts were classified into four topics: brand awareness, access to treatment, treatment experience, and treatment support. Subtopics provided deeper insights into stakeholder experiences. This structured approach provided a comprehensive understanding of the global social media data.
RESULTS: 1046 relevant global posts by Patients (84%), Caregivers (3%), and HCPs (13%) in English were analyzed, posted from Aug 2021 to Sept 2024 on social media platforms. Patient sentiment overall for VYVGART was positive (49%), highlighting symptom relief, improved QOL, and convenience, though challenges like insurance issues, side effects, and varied treatment effectiveness were also reported. Caregivers shared their patient’s experiences on VYVGART, noting improved QOL, but also raising concerns about eligibility challenges. HCP posts were largely neutral (78%), highlighting VYVGART’s FDA approval.
CONCLUSIONS: The number of online VYVGART posts grew significantly over the study timeframe, with patients highlighting improved QOL and access challenges, caregivers expressing improved patient performance of activities of daily living and access challenges, and HCPs sentiment was largely neutral.
METHODS: To capture VYVGART-Hytrulo-gMG posts from social media platforms, relevant keywords were identified. Data was collected using Brandwatch, removing irrelevant content to retain meaningful discussions. Posts were categorized into stakeholder groups—patients, caregivers, and HCPs—and analyzed with ZS GenAI algorithms, followed by manual validation. Posts were classified into four topics: brand awareness, access to treatment, treatment experience, and treatment support. Subtopics provided deeper insights into stakeholder experiences. This structured approach provided a comprehensive understanding of the global social media data.
RESULTS: 1046 relevant global posts by Patients (84%), Caregivers (3%), and HCPs (13%) in English were analyzed, posted from Aug 2021 to Sept 2024 on social media platforms. Patient sentiment overall for VYVGART was positive (49%), highlighting symptom relief, improved QOL, and convenience, though challenges like insurance issues, side effects, and varied treatment effectiveness were also reported. Caregivers shared their patient’s experiences on VYVGART, noting improved QOL, but also raising concerns about eligibility challenges. HCP posts were largely neutral (78%), highlighting VYVGART’s FDA approval.
CONCLUSIONS: The number of online VYVGART posts grew significantly over the study timeframe, with patients highlighting improved QOL and access challenges, caregivers expressing improved patient performance of activities of daily living and access challenges, and HCPs sentiment was largely neutral.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PCR203
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Neurological Disorders, SDC: Rare & Orphan Diseases