EVOLUTION OF PATIENT-REPORTED BURDEN AND UNMET NEEDS IN HEREDITARY ANGIOEDEMA: A COMPARATIVE SOCIAL MEDIA LISTENING ANALYSIS
Author(s)
Julia Braverman, PhD1, Simona Gavata-Steiger, MBA, MPH2, Viji Queen, PharmD3, Revanth Munthu, BE4, Ashdalekshmi K, Jr., BS3, Nicolas Scheuer, MsC5, Maebh Kelly, BSc, PhD6;
1CSL Behring, Director, Waltham, MA, USA, 2CSL Behring, immensee, Switzerland, 3MadeAI, Cambridge, MA, USA, 4MadeAI, Nagercoil, India, 5CSL Behring, Zurich, Switzerland, 6CSL Behring, Gatwick, United Kingdom
1CSL Behring, Director, Waltham, MA, USA, 2CSL Behring, immensee, Switzerland, 3MadeAI, Cambridge, MA, USA, 4MadeAI, Nagercoil, India, 5CSL Behring, Zurich, Switzerland, 6CSL Behring, Gatwick, United Kingdom
Presentation Documents
OBJECTIVES: To assess the evolving patient-reported burden and unmet needs in hereditary angioedema (HAE) using social media listening, by updating previously reported data (January 2018-October 2023) with findings from a recent period (November 2023-October 2025), and evaluate the impact of recent therapeutic advances on patient experience.
METHODS: Publicly available HAE-related posts from X, Facebook, Reddit, Quora, YouTube, and patient forums were identified using predefined keywords. Posts were screened for relevance, deduplicated, anonymized, and labeled using a structured-framework capturing burden, unmet needs, and treatment-related themes. Subject matter experts categorized relevant posts for quantitative and qualitative analysis.
RESULTS: Of the 3,069 posts collected, 1,517 were identified as relevant HAE-related posts. Patient-reported burden was discussed in 79% (1,201/1,517) of posts. Disease burden was predominant, reported in 87% burden-related posts, commonly describing unpredictable swelling, pain, itching, anxiety, emergency care, and social limitations. Other burden categories included health-service (19%), medication (13%), financial (9%), career-related (4%), and injection-burden (3%). Unmet needs were reported in 42% (634/1,517) of posts. Unmet educational needs were most frequent (50%), reflecting demand for clearer disease and treatment information. Treatment-related unmet needs were noted in 42% of posts driven by access barriers, insurance denials, cost concerns, and dissatisfaction. Diagnostic unmet needs were discussed in 37% of posts, while health-service unmet needs accounted for 16%. Compared with the prior six-year analysis, this two-year update showed proportionally higher disease burden (61% to 87%) and diagnostic (26% to 37%) and educational unmet needs (46% to 50%), alongside declines in injection (12% to 3%) and career-related burden (6% to 4%).
CONCLUSIONS: HAE patient discussions continue to reflect substantial disease burden and unmet needs despite treatment advances. Nearly two years after the prior analysis, disease burden and diagnostic and educational gaps persist or have increased, while injection and career-related burdens show some improvement, underscoring gaps between innovation and real-world patient experience.
METHODS: Publicly available HAE-related posts from X, Facebook, Reddit, Quora, YouTube, and patient forums were identified using predefined keywords. Posts were screened for relevance, deduplicated, anonymized, and labeled using a structured-framework capturing burden, unmet needs, and treatment-related themes. Subject matter experts categorized relevant posts for quantitative and qualitative analysis.
RESULTS: Of the 3,069 posts collected, 1,517 were identified as relevant HAE-related posts. Patient-reported burden was discussed in 79% (1,201/1,517) of posts. Disease burden was predominant, reported in 87% burden-related posts, commonly describing unpredictable swelling, pain, itching, anxiety, emergency care, and social limitations. Other burden categories included health-service (19%), medication (13%), financial (9%), career-related (4%), and injection-burden (3%). Unmet needs were reported in 42% (634/1,517) of posts. Unmet educational needs were most frequent (50%), reflecting demand for clearer disease and treatment information. Treatment-related unmet needs were noted in 42% of posts driven by access barriers, insurance denials, cost concerns, and dissatisfaction. Diagnostic unmet needs were discussed in 37% of posts, while health-service unmet needs accounted for 16%. Compared with the prior six-year analysis, this two-year update showed proportionally higher disease burden (61% to 87%) and diagnostic (26% to 37%) and educational unmet needs (46% to 50%), alongside declines in injection (12% to 3%) and career-related burden (6% to 4%).
CONCLUSIONS: HAE patient discussions continue to reflect substantial disease burden and unmet needs despite treatment advances. Nearly two years after the prior analysis, disease burden and diagnostic and educational gaps persist or have increased, while injection and career-related burdens show some improvement, underscoring gaps between innovation and real-world patient experience.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR65
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Rare & Orphan Diseases