Urticaria Voices: Real-World Treatment Patterns and Outcomes in Chronic Spontaneous Urticaria

Jonathan A Bernstein; Tonya A Winders; Jessica McCarthy; Pallavi Saraswat; Nadine Chapman-Rothe; Tara Raftery; Karsten Weller

doi:10.1007/s13555-025-01461-8

Urticaria Voices: Real-World Treatment Patterns and Outcomes in Chronic Spontaneous Urticaria

Dermatol Ther (Heidelb). 2025 Jun 22. doi: 10.1007/s13555-025-01461-8. Online ahead of print.

Authors

Jonathan A Bernstein^{1

2}, Tonya A Winders³, Jessica McCarthy⁴, Pallavi Saraswat⁵, Nadine Chapman-Rothe⁶, Tara Raftery⁷, Karsten Weller⁸

Affiliations

¹ Division of Allergy and Immunology, University of Cincinnati, Cincinnati, OH, USA. bernstja@ucmail.uc.edu.
² Advanced Allergy Services, LLC and Bernstein Allergy Group and Clinical Research Center, Cincinnati, OH, USA. bernstja@ucmail.uc.edu.
³ Global Allergy and Airways Patient Platform, Vienna, Austria.
⁴ Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA.
⁵ Novartis Healthcare Pvt Ltd, Hyderabad, India.
⁶ Novartis Pharma AG, Basel, Switzerland.
⁷ Novartis Ireland Ltd, Dublin, Ireland.
⁸ Institute of Allergology, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany.

PMID: 40544394
DOI: 10.1007/s13555-025-01461-8

Abstract

Introduction: Chronic spontaneous urticaria (CSU) is characterized by itchy wheals/hives and/or angioedema lasting longer than 6 weeks. Herein, we describe patients' perspectives from the global Urticaria Voices study reporting treatment patterns, disease burden, treatment satisfaction, and expectations.

Methods: This global, cross-sectional online survey was conducted from February to September 2022 in patients with CSU. Eligible patients had a self-reported clinician-provided diagnosis of CSU. Data were analyzed descriptively and reported as percentages (n/N), means (standard deviation [SD]), or 95% confidence intervals.

Results: Overall, 582 patients with CSU were included in this analysis (62% women; mean [SD] age: 42.0 [11.9] years). At the time of the survey, patients reported taking 2.9 (2.6) concomitant therapies; most patients (79%) were prescribed H1-antihistamines (H1-AH), of which 42% took first-generation H1-AH and 52% took second-generation H1-AH. Since the initiation of their first prescribed treatment (6.3 [8.2] years), 80% of patients reported H1-AH switching (2.3 times on average), 62% of whom reported up-dosing (2.9 times on average). In addition, 50% reported currently using glucocorticoids (cream: 72.1%; oral: 48.3%; injection: 25.5%) and 33% reported using any biologic (omalizumab: 26%; dupilumab: 16%): montelukast (18%), doxepin (16%), or ciclosporin (16%). Apart from their prescribed treatments, patients reported currently using additional services (dietetic consultations: 21%, psychological support: 19%) and self-care strategies (e.g., using topical creams, avoiding certain clothing and foods) for CSU management. Most patients (65%) reported that their current treatments did not adequately control their CSU symptoms. Overall, 37% of patients reported experiencing stress due to the unpredictable nature of the disease.

Conclusions: Despite H1-antihistamine switching and up-dosing, most patients (84%) had inadequately controlled disease. Approximately one-quarter of inadequately controlled patients were escalated to more effective treatments such as biologics. These results suggest a need for additional treatment options for patients with inadequately controlled CSU to provide sustained symptom relief.

Keywords: Chronic spontaneous urticaria; Disease burden; Disease control; H1-Antihistamines; Patients’ perspectives; Real-world evidence; Treatment patterns; Treatment satisfaction and expectations; Urticaria voices.