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《更新的宪章:改善严重哮喘患者护理的关键原则》。

A Renewed Charter: Key Principles to Improve Patient Care in Severe Asthma.

机构信息

Royal Brompton and Harefield Hospitals, School of Immunology and Microbial Sciences, King's College, London, UK.

Department of Respiratory Medicine, Royal Brompton Hospital, Sydney Street, London, SW3 6NP, UK.

出版信息

Adv Ther. 2022 Dec;39(12):5307-5326. doi: 10.1007/s12325-022-02340-w. Epub 2022 Oct 17.

Abstract

Asthma is a heterogenous respiratory disease, usually associated with chronic airway inflammation and hyper-responsiveness, which affects an estimated 339 million people worldwide. Severe asthma affects approximately 5-10% of patients with asthma, approximately 17-34 million people globally, more than half of whom have uncontrolled disease. Severe asthma carries a substantial burden of disease, including unpredictable symptoms and potentially life-threatening flare-ups. Furthermore, severe asthma has a substantial burden on health care systems and economies worldwide. In 2018, a group of experts from the clinical community, patient support groups, and professional organisations joined together to develop the Severe Asthma Patient Charter, which set out six principles to define what patients should expect for the management of their severe asthma and what should constitute a basic standard of care. Since the publication of that original Charter in 2018, several important changes have occurred, including an improved understanding of asthma and effective asthma management; several new therapies have become available; and finally, the COVID-19 pandemic has placed a spotlight on respiratory conditions, the workforces that treat them, and the fundamental importance of health care system resilience. With those developments in mind, we, representatives of the academic, clinical, and patient advocacy group communities, have updated the Charter to Improve Patient Care in Severe Asthma with a focus on six principles: (1) I deserve a timely, comprehensive assessment of my asthma and its severity; (2) I deserve a timely, straightforward referral to an appropriate specialist for my asthma when it is not well controlled; (3) I deserve to understand what makes my asthma worse; (4) I deserve access to treatment and care that reduces the impact of asthma on my daily life; (5) I deserve not to be reliant on systemic corticosteroids; (6) I deserve to be involved in decisions about my treatment and care.

摘要

哮喘是一种异质性呼吸道疾病,通常与慢性气道炎症和高反应性有关,据估计,全球有 3.39 亿人受到影响。严重哮喘影响全球约 5-10%的哮喘患者,约 1.734 亿人,其中一半以上的患者疾病未得到控制。严重哮喘会带来沉重的疾病负担,包括症状不可预测和潜在危及生命的恶化。此外,严重哮喘对全球的医疗保健系统和经济也造成了巨大负担。2018 年,一组来自临床社区、患者支持团体和专业组织的专家共同制定了《严重哮喘患者宪章》,该宪章提出了六个原则,定义了患者对其严重哮喘管理的期望,以及应构成基本护理标准。自 2018 年原始宪章发布以来,已经发生了一些重要变化,包括对哮喘的认识提高和有效的哮喘管理;出现了几种新的治疗方法;最后,COVID-19 大流行使人们关注呼吸状况、治疗这些疾病的劳动力以及医疗保健系统弹性的根本重要性。考虑到这些发展,我们作为学术、临床和患者倡导团体社区的代表,更新了宪章,以改善严重哮喘患者的护理,重点关注六个原则:(1)我应该及时、全面地评估我的哮喘及其严重程度;(2)当我的哮喘控制不佳时,我应该及时、直接地转介给适当的专家;(3)我应该了解是什么使我的哮喘恶化;(4)我应该获得可以减轻哮喘对日常生活影响的治疗和护理;(5)我应该不依赖全身皮质类固醇;(6)我应该参与有关我治疗和护理的决策。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8b1c/9618548/88576cea93ee/12325_2022_2340_Fig1_HTML.jpg

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