WhatsApp Pilot Highlights Persistent Care Gaps in CSU

Chronic spontaneous urticaria (CSU) is a condition most dermatologists and allergists know well: recurrent hives, often with angioedema, lasting longer than 6 weeks without an identifiable cause. While guidelines clearly outline a stepwise approach to treatment, including escalation to omalizumab for antihistamine-refractory disease, many patients still experience prolonged symptoms, repeated corticosteroid exposure, and delayed access to effective therapy. These challenges are particularly evident in parts of Latin America, where access to specialists and biologics can be limited.¹

A recently published exploratory pilot study examined whether a simple, WhatsApp-based educational program could engage Spanish-speaking adults with clinician-diagnosed CSU and shed light on their baseline knowledge and lived experience with the disease. Rather than testing efficacy, the goal was to assess feasibility and better understand patient perspectives.²

Thirty adults initially registered, and 7 ultimately participated in a moderated 3-day WhatsApp group. Participants received brief educational messages in Spanish covering CSU mechanisms, common triggers, and guideline-based management. They were also encouraged to share their experiences. A short true/false knowledge assessment was completed at enrollment, and researchers analyzed group chat discussions using qualitative methods to identify common themes.

The participants were mostly women between 30 and 49 years of age and came from a range of Spanish-speaking countries, including Colombia, Argentina, Uruguay, Cuba, Chile, and Spain. Educational attainment was high, with most reporting a university or postgraduate degree. None had previously taken part in a formal CSU education program.

One notable finding was that baseline knowledge was already high. All participants scored at least 80% on the knowledge questionnaire, and more than half scored 100%. Many attributed this to years of managing CSU, searching for information online, and participating in patient-led support groups. This “ceiling effect” limited the usefulness of traditional pre- and post-education testing and suggests that digitally engaged CSU patients may already be well informed about their condition.

In contrast, qualitative discussions highlighted a heavy and ongoing disease burden. Participants described severe itch, frequent flares, angioedema, sleep disruption, and impaired daily functioning. Several reported long-term or repeated use of systemic corticosteroids and emergency department visits, often due to poor symptom control with antihistamines alone. Commonly reported triggers included heat, pressure, stress, infections, temperature changes, NSAIDs, and hormonal factors.

Limited access to biologic therapy was a recurring theme. Participants from several countries described omalizumab as unavailable, difficult to obtain through public systems, or financially out of reach. Those who had eventually received omalizumab consistently reported major improvement. Equally striking were accounts of encounters with clinicians who were unfamiliar with CSU guidelines, leading to mislabeling of symptoms as stress-related or allergic in nature and prolonged reliance on steroids. These experiences drove many patients to seek validation and practical advice through online peer communities.

Although the study included only 7 participants and did not assess postintervention outcomes, the consistency of these themes is notable. High disease burden, corticosteroid dependence, gaps in clinician familiarity with CSU management, and restricted access to biologics are well documented in the region, but this study adds direct patient perspectives.

From a practical standpoint, the pilot shows that WhatsApp-based engagement is feasible and acceptable for Spanish-speaking adults with CSU. However, it also suggests that patient-only education may have limited impact in populations that are already highly informed. The authors propose that future efforts should shift toward hybrid models that combine patient engagement with targeted education for frontline clinicians. Such approaches may be more effective in reducing diagnostic delays, minimizing inappropriate steroid use, and improving access to guideline-recommended therapies across diverse healthcare settings.

References

1. Tbakhi B, Ware K, Park HS, Bernstein JS, Bernstein JA. An overview of chronic spontaneous urticaria: Diagnosis, management, and treatment. Allergy Asthma Immunol Res. 2025;17(5):531-546. doi:10.4168/aair.2025.17.5.531
2. Edwards E, Lange Nava C, Constanza J, Tran A, Abramovits W, Yosipovitch G. Feasibility and patient experiences in a WhatsApp-based educational pilot for Spanish-speaking adults with chronic spontaneous urticaria. Int J Dermatol. Published online January 13, 2026. doi:10.1111/ijd.70265