Significant Disease Burden and Management Issues in Chronic Spontaneous Urticaria

Patients with chronic spontaneous urticaria experienced a long delay in diagnosis, a substantial impact on their quality of life, and often received inadequate treatment, highlighting the need for better management and understanding of the condition. | Image Credit: Tanapat Lek,jew - stock.adobe.com

Patients with chronic spontaneous urticaria (CSU) have a high risk of disease burden, often due to delayed diagnosis, insufficient symptom control, and impacts on mental or emotional well-being, so they require patient-centered approaches to minimize negative outcomes, according to a study published in Dermatology and Therapy.¹

Urticaria, informally known as hives, affect an estimated 20% of people at some point during their lives and can be triggered by various substances or situations; in some instances, urticaria is allergy related.² These hives present themselves as swollen, itchy, and typically painful raised areas on the skin.¹ Chronic urticaria is defined by hives that are frequent, mast cell driven, and last for more than 6 weeks. The condition is labeled as CSU when no external triggers are identified.

Previous research indicates that patients with CSU experience negative impacts on their health-related quality of life (HRQOL) and socioeconomic status, especially when greater disease activity is present.³ Researchers of the current study aimed to explore the physical symptoms beyond itch and hives in the Urticaria Voices study, and they delved into potential stigmas associated with CSU from the patients’ perspective.¹ Urticaria Voices was a noninterventional, cross-sectional survey study involving patients with chronic urticaria and physicians treating chronic urticaria.

A total of 582 patients who were diagnosed with CSU were included in the study, with a mean age of 42.2 years, and 62% were female. The average time since official diagnosis was 7.1 years, and the average disease duration was 9.2 years.

Patients reported a mean of 2 years from the time they first started seeing symptoms to the time of diagnosis. At this time, patients met with a mean of 6.1 physicians. Almost half of the patients changed the physician responsible for managing their CSU at least once since their diagnosis. The most common reasons for switching doctors were to find a more specialized physician (36%), the wish to be considered for a more effective treatment (29%), and/or to maintain symptoms fully under control (29%).

Patients with unmet needs placed equal importance on more knowledge of chronic urticaria among primary care physicians (46%), more about the underlying causes (45%), better information about available treatments (44%), and better access to specialized doctors (43%) and treatments (42%).

During the study, a majority of patients were taking various types of antihistamines to treat CSU (79%), and some took concomitant glucocorticoids as creams (36%), oral (24%), and intravenous (13%). In some cases, patients may have been taking more than 1 glucocorticoid.

In the last 4 weeks, 80% of patients with CSU had their disease inadequately controlled. Of all the patients treated with any form of antihistamine, 84% remained inadequately controlled, 53% took second generation H1-antihistamines, and 48% took first generation H1-antihistamines. Patients who relied exclusively on antihistamines for managing their conditions also remained inadequately controlled. Three out of 4 patients who received an increased dosage indicated either no relief (7%) or only partial (68%) improvement in their symptoms.

The physical symptoms reported by patients included sleeping problems (62%), while half reported experiencing pain (55%) and fatigue (49%) during an exacerbation. Patients who experienced pain reported it was located at the region of hives (59%), angioedema (34%), and joints (34%). Additionally, burning or stinging pain (70%) was reported most frequently, followed by aching/swelling (61%) and soreness after scratching the skin (57%).

Patients reported a moderately negative impact of CSU on their lives, and 80% said their disease was inadequately controlled. Patients with inadequate control reported higher overall negative impact across all HRQOL domains: mental and emotional well-being (6.3), social life and intimate relationships (5.8), activities of daily living (5.6), and financial status (5). Significant differences were identified compared with patients whose disease was adequately controlled, who reported less impact on their mental and emotional well-being (4.9), social life and intimate relationships (4.6), activities of daily living (4.2), and financial status (3.2).

Patients with CSU often reported experiencing some form of stigma and discrimination (63%), including being stared at in public (33%) or being asked if they are contagious (33%). Some patients reported that others refuse to shake their hand or touch them (18%), and others reported being made the center of jokes (15%). A small proportion of patients reported being bullied (12%), humiliated (12%), or publicly discriminated against (10%).

Limited access to the internet and/or limited digital literacy may have restricted the overall reach of the study due to its survey design. Inadequate representation of older individuals or those less familiar with digital tools could have affected the generalizability of the study. The cross-sectional design also limits the findings because it relies on patients’ memory for their medication histories, which could have resulted in recall bias. Overall, the design does not allow researchers to track changes in conditions, treatment efficacy, and QOL over time.

The substantial burden patients with CSU experience could be minimized through health care systems that shift their focus to prioritize education, earlier diagnosis, and achieving well-controlled CSU through clear and structured treatment pathways. A collaborative approach involving dermatologists, allergists, and psychologists could further support effective disease management.

“These findings from this study underscore the necessity for increased awareness and understanding of CSU among both patients and clinicians, which is essential for improving patient care and outcomes,” study authors concluded.

References

1. Weller K, Winders T, McCarthy J, Raftery T, Saraswat P. Urticaria voices: real-world experience of patients living with chronic spontaneous urticaria. Dermatol Ther (Heidelb). 2025; 15:747-761. doi:10.1007/s13555-025-01348-8

2. Chronic spontaneous/idiopathic urticaria (chronic hives). ACAAI Public Website. Accessed April 14, 2025. https://acaai.org/allergies/allergic-conditions/skin-allergy/chronic-hives/

3. Maurer M, Abuzakouk M, Bérard F, et al. The burden of chronic spontaneous urticaria is substantial: real-world evidence from ASSURE-CSU. Allergy. 2017;72(12):2005-2016. doi:10.1111/all.13209