Insights Into the Burden and Unmet Needs of Patients With Hereditary Angioedema: A Retrospective Social Media Listening Study

OBJECTIVES: Hereditary angioedema (HAE) is a rare genetic disease characterized by recurrent, painful, unpredictable, and debilitating attacks of angioedema which are detrimental to patients’ quality of life. Understanding the experience of patients living with HAE and existing unmet medical needs is critical for HAE management optimization. Social media has revolutionized the ability of patient communities to freely find, exchange and discuss health information. This social media listening study identified and characterized experiences, disease burden, and unmet needs of patients living with HAE.

METHODS: We conducted a retrospective study by using iterative, keyword-based searches to gather data from various social media platforms such as Twitter, Facebook, Reddit, Quora, YouTube, and patient forums. Public posts from January 2018 to October 2023 were manually collected and cleaned to remove duplicate entries, followed by anonymization to ensure patient privacy. Following this, subject matter experts screened and categorized relevant information for in-depth quantitative and qualitative analysis.

RESULTS: Of 6012 HAE-related posts identified, 892 were from patients, family members or healthcare professionals that discussed HAE burden and unmet needs. Of 459 posts relating to burdens, the most common topic was disease burden (61%). These posts discussed persistent swelling, painful attacks, and frequent flare-ups, resulting in hospital admissions, social rejection, insomnia and general discomfort. Other burden-related topics (>10%) included health service (15%), medication (12%), and injection (11%). Unmet needs were discussed in 270 posts, relating to treatment (46%), education (31%), health service (26%) and diagnosis (16%). Treatment needs included challenges such as insurance denials, medication availability and treatment costs, whilst educational needs were patients wanting more information on HAE, HAE medications, and HAE medication interactions.

CONCLUSIONS: Despite the availability of HAE treatments, unmet needs still exist and patients living with HAE experience substantial disease burden. Real-life experiences gathered via social media can support HAE management optimization.