ASSESSING SOCIAL MEDIA SENTIMENT TO ANALYZE PATIENT, CAREGIVER AND HEALTHCARE PROFESSIONALS EXPERIENCE WITH IMMUNOGLOBULIN (IVIG AND SCIG) FOR CHRONIC INFLAMMATORY DEMYELINATING POLYRADICULOPATHY (CIDP)
Author(s)
Tom Hughes, BScPharm, PhD1, SWAPNA KARKARE, PharmD1, Anthony C. Colavecchia, PharmD, PhD1, Lu Shi, PhD, MPH1, Divya Nagpal, B.E.2, Yash Verma, BPharm, MBA2, Aditya Batra, B.E, MBA2, Aishwarya Nair, B.E., MBA2;
1argenx, Boston, MA, USA, 2ZS Associates, Gurugram, India
1argenx, Boston, MA, USA, 2ZS Associates, Gurugram, India
OBJECTIVES: To categorize and quantify social media posts related to Immunoglobulin use in CIDP from patients, caregivers, and HCPs; to analyze sentiments; and to generate insights that inform research strategies and patient engagement tactics.
METHODS: Social media posts mentioning Immunoglobulin therapy in CIDP were identified via Brandwatch (platforms include X, Reddit, Youtube, Bluesky, Forums, etc.) using predefined keywords. Content was categorized by stakeholder type (patient, caregiver, HCP) and analyzed using GenAI algorithms with manual validation. Posts were categorized into five key themes: ‘treatment outcomes’, ‘treatment experience’, ‘treatment awareness’, ‘access to treatment’ and ‘treatment support’.
RESULTS: A total of 900 English-language social media posts from September 2023 to August 2025 were analyzed. Patients and caregivers expressed predominantly negative sentiment toward IG therapy, while HCPs maintained a neutral, informational tone. Out of 795 total patient posts analyzed, 45% of negative patient sentiment was driven by side effect burden, variable long-term effectiveness, reimbursement issues, and unsatisfactory responses prompting treatment switches. 34% of posts expressed positive sentiment, highlighting functional improvements, enhanced quality of life, and treatment effectiveness. Out of 73 caregiver posts, 52% of negative caregiver sentiment was driven by fluctuating treatment effectiveness, challenges with IG infusions, and persistent access barriers. 30% of these posts reported positive experiences, noting symptom stabilization and improved functioning. With limited HCP posts (N=32), conversations remained largely neutral, centered on typical use, effectiveness, and comparisons to newer therapies.
CONCLUSIONS: Social media discussions reveal unmet needs in CIDP, particularly among patients and caregivers who report inconsistent treatment response, burdensome side effects, and ongoing access challenges with IG therapies. Understanding these perspectives can guide research and engagement strategies to address disease burden and improve care pathways.
METHODS: Social media posts mentioning Immunoglobulin therapy in CIDP were identified via Brandwatch (platforms include X, Reddit, Youtube, Bluesky, Forums, etc.) using predefined keywords. Content was categorized by stakeholder type (patient, caregiver, HCP) and analyzed using GenAI algorithms with manual validation. Posts were categorized into five key themes: ‘treatment outcomes’, ‘treatment experience’, ‘treatment awareness’, ‘access to treatment’ and ‘treatment support’.
RESULTS: A total of 900 English-language social media posts from September 2023 to August 2025 were analyzed. Patients and caregivers expressed predominantly negative sentiment toward IG therapy, while HCPs maintained a neutral, informational tone. Out of 795 total patient posts analyzed, 45% of negative patient sentiment was driven by side effect burden, variable long-term effectiveness, reimbursement issues, and unsatisfactory responses prompting treatment switches. 34% of posts expressed positive sentiment, highlighting functional improvements, enhanced quality of life, and treatment effectiveness. Out of 73 caregiver posts, 52% of negative caregiver sentiment was driven by fluctuating treatment effectiveness, challenges with IG infusions, and persistent access barriers. 30% of these posts reported positive experiences, noting symptom stabilization and improved functioning. With limited HCP posts (N=32), conversations remained largely neutral, centered on typical use, effectiveness, and comparisons to newer therapies.
CONCLUSIONS: Social media discussions reveal unmet needs in CIDP, particularly among patients and caregivers who report inconsistent treatment response, burdensome side effects, and ongoing access challenges with IG therapies. Understanding these perspectives can guide research and engagement strategies to address disease burden and improve care pathways.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR92
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, SDC: Neurological Disorders, SDC: Rare & Orphan Diseases