Allergy & Immunology

Chronic Spontaneous Urticaria

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Shared Decision Making in Chronic Spontaneous Urticaria: Acknowledging the Burden and Empowering Patients

patient care perspectives by Jonathan A. Bernstein, MD
Overview
<p>Chronic spontaneous urticaria (CSU) can have a significant impact on patient quality of life (QOL) due to persistent symptoms manifesting as raised welts, swelling, and itching, as well as secondary effects such as fatigue and treatment-related side effects. Shared decision making between physicians and patients with CSU plays a critical role in guiding treatment decisions that can improve patient outcomes.</p>
Expert Commentary
“. . . it is important to provide patients with CSU with as much information as possible so that they can make the correct informed decision with their physician’s supervision.”
— Jonathan A. Bernstein, MD

CSU has a significant impact on patient QOL, which has been confirmed in studies using standardized QOL assessments that account for overall well-being and specific health-related parameters such as sleep, leisure activities, and work impairment. When you start discussing a patient’s symptoms with them and objectifying this information, you will find that CSU can have a significant impact on all these different key components.

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Urticaria Voices is a real-world study that surveyed patients with CSU to get a real sense of the disease’s impact on health. What was found in this study was that patients were generally not well controlled and continued to experience frequent hives, angioedema, and other issues. Patients also reported problems with sleep and fatigue, which can be associated with their CSU as well as side effects from medications used to treat hives, such as first-generation antihistamines. For this reason, second-generation nonsedating or low-sedating H1 antihistamines are recommended, as their crossing of the blood-brain barrier is minimal, resulting in less fatigue and sedation.

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That is why it is important to, when you see patients with CSU, ensure that they have been diagnosed correctly, assess their disease severity, and survey what treatment(s) they had previously tried. We can then make personalized treatment recommendations that can improve their overall well-being and satisfaction.

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This highlights the importance of shared decision making, which accounts for the patient’s personal preferences and values when it comes to making treatment recommendations. When patients participate, they are usually more engaged in their treatment, and this helps facilitate improved treatment outcomes. It is very important to educate patients about what hives are, the differences between acute vs chronic hives, the significance of angioedema that can occur with chronic hives in up to 40% of cases, and urticaria subtypes such as chronic inducible hives, which can be triggered by the physical scratching of the skin, exercise, heat, cold temperatures, and pressure, among other triggers. We also try to help patients understand the underlying pathogenesis of hives, including the critical role of effector cells such as mast cells, and this helps explain how we target different therapies for this chronic condition.

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Thus, it is important to provide patients with CSU with as much information as possible so that they can make the correct informed decision with their physician’s supervision. For example, patients may want to know what a specific study showed, what the primary and secondary outcomes of the study were, how the severity of CSU was measured, and what the treatment outcomes were. Furthermore, once a therapy is selected, patients want to understand its route of administration, its onset of action, the improvement in hives compared with the placebo, the sustained response over time, how it compares to other treatments, and its safety.

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We do have several published guidelines and an upcoming treatment guideline for CSU that is currently under development. The most recent US guideline was published in 2014, and a more recent international guideline was published in 2022. These guidelines combine objective evidence from studies with expert opinion about management and treatment to form consensus recommendations that can be shared with patients. They are intended to provide consistent recommendations on how to approach patients with CSU from start to finish using the shared decision-making approach. Ultimately, we want to empower our patients to participate in their care.

References

Bernstein JA, Lang DM, Khan DA, et al. The diagnosis and management of acute and chronic urticaria: 2014 update. J Allergy Clin Immunol. 2014;133(5):1270-1277. doi:10.1016/j.jaci.2014.02.036

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Keller L, Stitt J. Chronic spontaneous urticaria: quality of life and economic impacts. Immunol Allergy Clin North Am. 2024;44(3):453-467. doi:10.1016/j.iac.2024.03.004

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Weller K, Winders T, McCarthy J, et al. Urticaria Voices: real-world experience of patients living with chronic spontaneous urticaria. Dermatol Ther (Heidelb). 2025;15(3):747-761. doi:10.1007/s13555-025-01348-8

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Zuberbier T, Abdul Latiff AH, Abuzakouk M, et al. The international EAACI/GA²LEN/EuroGuiDerm/APAAACI guideline for the definition, classification, diagnosis, and management of urticaria. Allergy. 2022;77(3):734-766. doi:10.1111/all.15090

Jonathan A. Bernstein, MD

Adjunct Professor of Clinical Medicine
Division of Rheumatology, Allergy and Immunology
Department of Internal Medicine
University of Cincinnati Medical Center
Partner, Advanced Allergy Services and Bernstein Clinical Research Center, LLC
Cincinnati, OH

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