A Patient Charter for Chronic Urticaria

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.

Keywords: Angioedema; Chronic urticaria; Health care; Hives; Patient advocacy; Wheals.

Fig. 1

A Wheals associated with CSU. B Wheals associated with CIndU (symptomatic dermographism). C Urticaria on dark skin. D Urticaria in a child. F Angioedema and facial urticaria. G Angioedema of the right hand. Images reproduced from https://dermnetnz.org/topics/urticaria-images under Creative Commons Attribution-NonCommercial-NoDerivs 3.0 (New Zealand). CIndU chronic inducible urticaria, CSU chronic spontaneous urticaria

Fig. 2

Diagnostic algorithm for CU. Reproduced from Zuberbier et al., 2022 under Creative Commons Attribution-NonCommercial License [1]. AAE acquired angioedema due to C1-inhibitor deficiency, ACE-Inh angiotensin-converting enzyme inhibitor, AE angioedema, AID autoinflammatory disease, HAE hereditary angioedema

Fig. 3

Recommended treatment algorithm for urticaria. Reproduced from Zuberbier et al., 2022 under Creative Commons Attribution-NonCommercial License [1]. H1-AH H1-antihistamines

Fig. 4

Predictors of nonresponse to second-generation antihistamines and omalizumab and response to cyclosporine. Reproduced from Fok et al., 2021 under Creative Commons Attribution-NonCommercial License [54]. BHRA basophil histamine release assay, CIndCU chronic inducible urticaria, CRP C-reactive protein, CU-Q2oL Chronic Urticaria Quality of Life Questionnaire, sgAHs second-generation H1-antihistamines, UAS Urticaria Activity Score

Fig. 5

Patient needs in CSU (n = 103). Reproduced with permission from Sommer et al., 2020 [73]. CSU chronic spontaneous urticaria

Fig. 6

Key recommendations of the CU patient charter. CU chronic urticaria, OCS oral corticosteroid