Patient insights on chronic spontaneous urticaria in Malaysia: A social listening and qualitative interview study

Background: Chronic spontaneous urticaria (CSU) is a debilitating condition with substantial patient burden. In Malaysia, patient-centered data remain limited. Objective: To investigate the lived experiences, unmet needs, diagnosis, and treatment challenges of Malaysian CSU patients using a hybrid approach combining social media listening and in-depth interviews. Methods: This infodemiology study analyzed publicly available social media records related to CSU in Malaysia from October 2019 to September 2024. A keyword-based filtering and manual curation process was used to identify relevant records. In addition, qualitative interviews were conducted with 36 diagnosed CSU patients. Thematic analysis was applied to identify key insights across both data sources. Results: A total of 2,123 chronic urticaria-related and 325 pharmacological treatment-related social media records were analyzed, along with data obtained from 36 patient interviews. Patients frequently report delays in diagnosis, reliance on self-management strategies, emotional distress, and dissatisfaction with treatment outcomes. More than 80% of the interviewed patients reported moderate-to-severe itch and hives, with significant impacts on work, social life, and daily functioning. Nearly half of the interviewed patients (47%) had switched treatments because of inefficacies highlighting the limitation of prolonged reliance on antihistamine monotherapy. Both data sources revealed a significant psychosocial burden and a fervent desire for better patient education, emotional support, as well as digital tools and alternative treatments to help manage their condition. Conclusion: This study underscores the high burden of CSU in Malaysia, marked by significant quality-of-life impairments. The findings highlight the urgency of timely diagnosis, improved patient-centered communication, and timely escalation to effective therapies beyond antihistamines to enhance patient outcomes and quality of life.