A Patient Charter for Chronic Urticaria

被引:3
作者
Maurer, Marcus [1 ,2 ,3 ,4 ]
Albuquerque, Monica [5 ]
Boursiquot, Jean-Nicolas [6 ]
Dery, Elaine [7 ]
Gimenez-Arnau, Ana [8 ]
Godse, Kiran [9 ]
Guitierrez, Guillermo [10 ]
Kanani, Amin [11 ]
Lacuesta, Gina [12 ]
Mccarthy, Jessica [13 ]
Nigen, Simon [14 ]
Winders, Tonya [15 ]
机构
[1] Charite Univ Med Berlin, Inst Allergol, Berlin, Germany
[2] Free Univ Berlin, Berlin, Germany
[3] Humboldt Univ, Berlin, Germany
[4] Fraunhofer Inst Translat Med & Pharmacol ITMP, Allergol & Immunol, Berlin, Germany
[5] Assoc Portuguesa Doentes Urticaria, Oeiras, Portugal
[6] Univ Laval, CHU Quebec, Quebec City, PQ, Canada
[7] Canadian Chron Urticaria Soc, Quebec City, PQ, Canada
[8] Univ Pompeu Fabra, Hosp Mar, Res Inst, Barcelona, Spain
[9] Fortis Hiranandani Hosp, Mumbai, India
[10] FUNDAPSO, Cali, Colombia
[11] Univ British Columbia, Vancouver, BC, Canada
[12] Dalhousie Univ, Halifax, NS, Canada
[13] Novartis Pharmaceut, E Hanover, NJ USA
[14] McGill Univ, Montreal Gen Hosp, Montreal, PQ, Canada
[15] Global Allergy & Airways Patient Platform, Vienna, Austria
关键词
Angioedema; Chronic urticaria; Health care; Hives; Patient advocacy; Wheals; QUALITY-OF-LIFE; REAL-LIFE; NEEDS; MANAGEMENT; H-1-ANTIHISTAMINES; QUESTIONNAIRE; DEFINITION; OMALIZUMAB; DIAGNOSIS; BURDEN;
D O I
10.1007/s12325-023-02724-6
中图分类号
R-3 [医学研究方法]; R3 [基础医学];
学科分类号
1001 ;
摘要
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.
引用
收藏
页码:14 / 33
页数:20
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