A patient charter for chronic urticaria

Maurer, Marcus; Albuquerque, Mónica; Boursiquot, Jean-Nicolas; Dery, Elaine; Giménez Arnau, Anna Maria; Godse, Kiran V.; Gutiérrez, Guillermo; Kanani, Amin; Lacuesta, Gina; McCarthy, Jessica; Nigen, Simon; Winders, Tonya

doi:http://dx.doi.org/10.1007/s12325-023-02724-6

A patient charter for chronic urticaria

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Maurer M, Albuquerque M, Boursiquot JN, Dery E, Giménez-Arnau A, Godse K, et al. A patient charter for chronic urticaria. Adv Ther. 2024 Jan;41(1):14-33. DOI: 10.1007/s12325-023-02724-6

Abstract

Chronic urticaria (CU) is the recurring development of wheals (aka "hives" or "welts"), angioedema, or both for more than 6 weeks. Wheals and angioedema occur with no definite triggers in chronic spontaneous urticaria, and in response to known and definite physical triggers in chronic inducible urticaria. Approximately 1.4% of individuals globally will have CU during their lifetime. The itching and physical discomfort associated with CU have a profound impact on daily activities, sexual function, work or school performance, and sleep, causing significant impairment in a patient's physical and mental quality of life. CU also places a financial burden on patients and healthcare systems. Patients should feel empowered to self-advocate to receive the best care. The voice of the patient in navigating the journey of CU diagnosis and management may improve patient-provider communication, thereby improving diagnosis and outcomes. A collaboration of patients, providers, advocacy organizations, and pharmaceutical representatives have created a patient charter to define the realistic and achievable principles of care that patients with CU should expect to receive. Principle (1): I deserve an accurate and timely diagnosis of my CU; Principle (2): I deserve access to specialty care for my CU; Principle (3): I deserve access to innovative treatments that reduce the burden of CU on my daily life; Principle (4): I deserve to be free of unnecessary treatment-related side-effects during the management of my CU; and Principle (5): I expect a holistic treatment approach to address all the components of my life impacted by CU. The stated principles may serve as a guide for healthcare providers who care for patients with CU and translate into better patient-physician communication. In addition, we urge policymakers and authors of CU treatment guidelines to consider these principles in their decision-making to ensure the goals of the patient are achievable.