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<ѻýҕl class="page_title">Chronic Spontaneous Urticaria
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MedpageToday

A Tool to Help Provide Better Care for Patients with Chronic Urticaria

<ѻýҕl class="dek">—A new 5-principle “charter” created by patients, clinicians, and advocacy organizations may be a valuable roadmap for improving care of individuals with chronic urticaria (CU).

A 5-principle patient charter may improve care for patients with chronic urticaria (CU), according to a commentary published in a recent issue of Advances in Therapy.1

Chronic urticaria: a global burden

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CU has been estimated to affect as much as 1.4% of the world’s population.1,2 It can occur spontaneously or in response to specific triggers. Symptoms, which can impact patients’ mental health and quality of life, include the presence of itchy, sometimes painful, hives and/or angioedema that lasts for more than 6 weeks.1 Recently updated treatment guidelines for CU, while providing timely, high-quality treatment advice, haven’t fully elucidated the role of patient-physician communication, which is also crucial for better outcomes.1,3

“We must do more than the current approach of antihistamines and steroids in treating CU. We now better understand the underlying inflammatory pathways and have a greater opportunity to interrupt the cycle of flares,” Tonya Winders, MBA, one of the commentary’s authors and president of the Global Allergy and Airways Patient Platform (GAAPP), told ѻýҕl. “People living with this condition want to better control the unpredictable symptoms and debilitating impacts of CU on their physical, mental, and emotional health.”

The new charter, Winders says, aims to outline these aspirations and calls on policymakers to “elevate this condition.”

Details of the charter

This 5-principle charter was authored collaboratively by patients, clinicians, advocates, and pharmaceutical industry representatives, all selected by the Global Allergy and Asthma Excellence Network’s (GA2LEN) Urticaria Centers of Reference and Excellence (UCARE) program, along with representatives from GAAPP.1

“CU has been unrecognized, and the patient voice not heard or understood fully in the medical literature,” Winders says. “The patient charter is the first of its kind to be authored by patients, advocates, and medical experts in the field.” Here are the details:

Principle 1: “I deserve an accurate and timely diagnosis of my CU.” The authors note that delays in diagnosis of CU are common because patients and providers often believe it will resolve on its own. Additionally, symptoms are frequently not present during healthcare encounters. This first principle is therefore designed to prevent these delays. The authors note that the 2022 international urticaria guideline algorithm can be used as an aid for timely diagnosis.1,3

Principle 2: “I deserve access to specialty care for my CU.” Primary healthcare providers and emergency department physicians are often the initial contacts for patients with CU.1 Surveys reveal that many primary healthcare providers feel inadequately informed about CU, leading to delayed diagnoses and treatment, underscoring the importance of patient access to specialized care for effective and appropriate treatment.1 The GA2LEN/UCARE network consists of practices that have met GA2LEN requirements for referral, allowing it to serve as a specialty care resource for providers treating patients with CU.1,4

Principle 3:I deserve access to innovative treatments that reduce the burden of CU on my daily life.” Antihistamines are ineffective in nearly half of CU patients.1,5 Principle 3 was included to remind clinicians to consider lesser-known treatments.1,5

Principle 4: “I deserve to be free of unnecessary treatment-related side effects during the management of my CU.” First-generation antihistamines, once commonly used for CU, are now discouraged due to side effects like drowsiness and impaired motor responses, which can lead to accidents.1 Second-generation antihistamines are preferred for their limited sedating effects, but caution is still advised, especially at higher doses. Oral corticosteroids (OCS) are used for severe CU flare-ups, but their long-term use is discouraged due to risks such as diabetes and cardiovascular issues, highlighting the need for optimizing non-OCS treatments. Principle 4 was included to ensure that individuals receive only medications that are necessary and in doses that minimize side effects.

Principle 5: “I expect a holistic treatment approach to address all the components of my life impacted by CU.” The authors note that effective management of CU should aim to alleviate symptoms and improve overall quality of life, and involve shared decision-making between patients, families, and healthcare providers. In addition, patient advocacy groups and professional organizations can provide reliable information and support, helping patients connect and cope with the challenges of living with CU.

A communication tool for patients and providers

There are additional resources available to aid clinicians in achieving the principles laid out in the charter. “The GA2LEN network has established the latest clinical guidelines and treatment algorithms consistent with this charter,” Winders notes, adding that “Dr. Marcus Maurer is the foremost global expert in CU, and he has a number of podcasts that also highlight how to ensure optimal care for those living with CU.”

One of the goals of the new charter is to serve as a communication tool for CU patients and their healthcare providers. “It helps clinicians better understand what matters most to patients,” says Winders. “It follows a logical patient journey and highlights where current barriers exist.”

Winders believes more research is needed to further optimize care for CU patients. “We also need more health economics and outcomes data to ensure we’re allocating resources to the treatments with the most positive outcomes for patients,” she says.

Published:

Adam Ash is an emergency medicine physician who practices in New York. His 15 years of experience in education, administration, and research allow him to write about a broad spectrum of medical topics.

References

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Patient Reports: A Key Resource in Treating Chronic Skin Conditions
A new international study reports that awareness of patient-reported outcome measures is limited among healthcare providers who treat patients with atopic dermatitis and chronic urticaria. It’s surprising and concerning.
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Systemic Corticosteroids for Urticaria: How Safe? How Effective?
While second-generation H1-antihistamines are standard therapy for both acute and chronic urticaria, some patients need additional treatment to find relief. A new study investigates whether short-course systemic corticosteroids are the answer.
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In CSU, Non-Dermal Conditions Impact Disease Control and Quality of Life
A recent study showed that up to one-third of patients with chronic spontaneous urticaria had non-skin-related symptoms, and these are tied to increased disease activity, poorer disease control, and poorer quality of life.
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Chronic Spontaneous Urticaria: Getting Patients to a Better Place
German investigators conducted an analysis of the patient experience in chronic spontaneous urticaria, identifying pitfalls and suggesting ways to improve care.
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Patients with Chronic Urticaria Can Make ‘Smart’ Use of Their Phones
It’s not the kind of selfie that first comes to mind, but for patients with symptoms of chronic urticaria, photos of skin lesions taken with their smartphone before a first visit are valuable for treating clinicians, say the results of this report.
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Skin Diseases Impair Quality of Life and Increase Stigmatization
The impact of skin diseases is not well understood in the general population among those who forgo clinical consultation. Approximately half of participants with one or more skin disease reported the condition to be quite or very embarrassing in both personal and work life, according to a large population-based survey.