Chronic spontaneous urticaria (CSU) is a skin condition characterized by the recurrence of hives (wheals), swelling of deep tissues (angioedema), or both that lasts 6 weeks or longer without any obvious external triggers. In contrast to acute urticaria, where a specific cause such as a drug, food, or infection is usually determined, CSU has no identifiable external cause, and most patients do not have an underlying systemic disorder. CSU is also sometimes referred to as “chronic idiopathic urticaria,” although advances in research demonstrate that over 50% of cases are driven by the dysregulation of the patients’ immune system. CSU affects approximately 0.5% to 1% of the general population, is more common in women, and can have a profound impact on quality of life, including sleep, mental health, career, and education. Although symptoms may resolve within months in some patients, many experience recurrent symptoms over several years.
The Canadian Skin Patient Alliance (CSPA) conducted a national online survey between October 2025 and February 2026, of patients with CSU (either formally diagnosed by a healthcare provider [HCP] or self-diagnosed) and caregivers of individuals with CSU to more comprehensively understand the patient journey with this condition in Canada. The survey explored diagnosis routes, healthcare experiences, treatment effectiveness, unmet needs, and the impact of CSU on daily living and quality of life. The survey results will be used to inform the development of CSPA educational programs and patient advocacy activities to address the gaps identified by this research. Additionally, the findings have generated the development of a number of recommendations for government, clinicians, and patient advocacy groups on processes and policies to support patients with CSU and reduce the detrimental impact of this condition. Finally, this report will serve as a baseline measure, and be used to track progress in the care and support of patients in Canada with CSU.
