A Patient Charter for Chronic Urticaria.

Angioedema Chronic urticaria Health care Hives Patient advocacy Wheals

Journal

Advances in therapy
ISSN: 1865-8652
Titre abrégé: Adv Ther
Pays: United States
ID NLM: 8611864

Informations de publication

Date de publication:
22 Nov 2023
Historique:
received: 29 09 2023
accepted: 30 10 2023
medline: 22 11 2023
pubmed: 22 11 2023
entrez: 22 11 2023
Statut: aheadofprint

Résumé

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.

Identifiants

pubmed: 37991694
doi: 10.1007/s12325-023-02724-6
pii: 10.1007/s12325-023-02724-6
doi:

Types de publication

Journal Article

Langues

eng

Informations de copyright

© 2023. The Author(s).

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Auteurs

Marcus Maurer (M)

Institute of Allergology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany.
Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Allergology and Immunology, Berlin, Germany.

Mónica Albuquerque (M)

Associação Portuguesa de Doentes de Urticária, Oeiras, Portugal.

Jean-Nicolas Boursiquot (JN)

CHU de Quebec-Université Laval, Quebec City, Canada.

Elaine Dery (E)

Canadian Chronic Urticaria Society, Quebec City, Canada.

Ana Giménez-Arnau (A)

Hospital del Mar Research Institute, Universitat Pompeu Fabra, Barcelona, Spain.

Kiran Godse (K)

Fortis Hiranandani Hospital, Mumbai, India.

Guillermo Guitiérrez (G)

FUNDAPSO, Cali, Colombia.

Amin Kanani (A)

University of British Columbia, Vancouver, Canada.

Gina Lacuesta (G)

Dalhousie University, Halifax, Canada.

Jessica McCarthy (J)

Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA.

Simon Nigen (S)

Montreal General Hospital, McGill University, Montreal, Canada.

Tonya Winders (T)

Global Allergy & Airways Patient Platform, Vienna, Austria. twinders@gaapp.org.

Classifications MeSH