Inadequate Relief for Patients with CSU Is Driving a Search for Alternatives Around the World

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In a poster presented at the Elevate-Derm Summer Conference from July 23 to 27, 2025, in Park City, Utah, results from the global Urticaria Voices research program confirmed that patients with chronic spontaneous urticaria (CSU) are not finding adequate disease relief and are searching for alternative methods to improve their quality of life.¹

Background

The Urticaria Voices study collected data from patients with CSU as well as providers who treat CSU to better assess aspects of disease management. Previous reports from Novartis addressed the unmet patient need, disease burden, and overall quality of life, as observed from the same Urticaria Voices research.² In this poster, investigators reported country-specific data on CSU’s impact based on health-related quality of life as well as the additional services needed for symptom relief.

Methods & Materials

Urticaria Voices is a global, cross-sectional, online survey of anonymized patients with CSU and physicians treating CSU. Results were collected between February 2022 and September 2022 and featured respondents from Canada, France, Germany, Italy, Japan, the UK, and the US. Adult patients had a clinical diagnosis of CSU and were currently being treated by a physician. The survey took about 40 minutes to complete. Questions on socio-demographics and treatments were asked, as well as the Urticaria Control Test (UCT).

Overall, 582 patients with CSU were included in the study with a mean age of 42 years. About 62% were female. Of this cohort, 79% were being treated with H1 antihistamines and 84% of these had inadequate disease control with a UCT of < 12. In all of the included countries, 36% of patients reported a high negative impact of CSU on their daily life, 56% reported moderate negative impact, and 8% were neutral.

Results

Across the globe, the negative impact of CSU was 36% based on mental and emotional well-being, 31% based on social life and intimate relationships, 29% based on daily living and activities, 23% based on professional academic life, 22% based on family life, and 20% based on finances. These health-related quality of life percentages were reported based on CSU at its worst symptoms.

Patients in Canada felt the highest impact on mental and emotional well-being (44%), while Germany felt the lowest (23%). Canada and Germany also expressed the highest and lowest impacts in social life and intimate relationships (40% and 16%, respectively). Patients in the UK reported the highest percentage in the daily living and activity domain (37%), while Germany showed the lowest (14%). These countries showed similar trends in the professional and academic life category (28% versus 14%, respectively). About 30% of patients in the US felt that their disease impacted their family life compared to just 9% in Germany. Finally, in the financial life domain, 28% of Italian patients were impacted versus 11% of Canadian patients.

Several other aspects of disease burden were assessed in this survey. Nearly 40% of patients around the world were stressed due to the spontaneous nature of their CSU. Over 31% avoided social interactions, while 33% were stared at in public and asked whether they were contagious. Many patients also expressed that they were unable to intimate with their partners as frequently as they desired (24%).

The Urticaria Voices Study also collected information on therapies and remedies outside of prescribed treatments for CSU. For example, 21% of patients were treated by a dietician, 19% turned to psychological support, 19% used homeopathic therapy, 18% meditated frequently, 15% visited a sleep clinic, and 13% utilized acupuncture for relief. Of all the countries listed, Germany used these additional services more frequently, while patients in Japan did not utilize any resources such as these.

Conclusion

Overall, most of the patients included in the Urticaria Voices Study reported ongoing symptoms and inadequate disease control, despite treatment. Of all the health-related quality of life domains, mental and emotional well-being was most heavily affected in all of the included countries. To combat this, patients in most countries sought additional services and therapies to find relief and disease management. The authors noted that “new treatments effectively alleviating the burden of CSU symptoms are required to support patients, general and mental well-being.”

References

1. Winders TA, Bernstein J, McCarthy J, et al. Impact of Chronic Spontaneous Urticaria on Health-Related Quality of Life Domains: Country-Specific Data from Patients Participating in the Urticaria Voices Study. Poster presented at Elevate-Derm Summer Conference, July 23-27, 2025, Park City, UT

2. Winders TA, et al. Poster presentation at: ECAAI 2024; 31 May–3 June 2024; Valencia, Spain. Abstract 000401.