Patient-physician interactions in hereditary angioedema—Key learnings from the coronavirus disease 2019 pandemic

IF 4.6 2区 医学 Q2 ALLERGY Clinical and Translational Allergy Pub Date : 2023-09-09 DOI:10.1002/clt2.12300
Marcus Maurer, Thomas Buttgereit, Markus Magerl, Kathrin Schön, Zsusanna Balla, Henriette Farkas
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Abstract

Background

The coronavirus disease pandemic and its containing measures have caused concerns for patients with hereditary angioedema (HAE) and their treating physicians. Both faced challenges surrounding interaction, and communication had to adapt to facilitate appropriate management. Specifically, the pandemic resulted in reduced in-person contact in clinics. Where possible, telemedicine appointments were offered and treatment outside the hospital setting was encouraged.

Body

The pandemic markedly affected patient-physician communication, which is essential to maintain partnerships and optimize care. Although patients with HAE are often experts in their condition, guidance by their physicians is essential, especially with the recent shift toward patient-centered management for rare diseases and shared decision-making (SDM). SDM enables patients to take control of their disease and allows the risks and benefits of treatment to be discussed with their physicians. This review explores perspectives from patients and physicians in the HAE clinical setting, particularly regarding their experiences with communication throughout the pandemic. We discuss the importance of SDM in rare diseases such as HAE, factors that impact effective communication, and potential solutions.

Conclusion

Since patient-centered care and SDM have particular relevance in rare diseases in general, we believe our findings could be transferrable and applicable in the management of other rare diseases.

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遗传性血管性水肿的医患互动2019冠状病毒病大流行的关键经验教训。
背景:冠状病毒疾病大流行及其控制措施引起了遗传性血管性水肿(HAE)患者及其治疗医生的担忧。双方都面临着互动方面的挑战,沟通必须适应以促进适当的管理。具体而言,新冠疫情减少了诊所的面对面接触。在可能的情况下,提供远程医疗预约,并鼓励在医院外进行治疗。身体:新冠疫情显著影响了医患沟通,这对保持伙伴关系和优化护理至关重要。尽管HAE患者通常是他们病情的专家,但医生的指导是至关重要的,尤其是最近转向以患者为中心的罕见病管理和共享决策(SDM)。SDM使患者能够控制自己的疾病,并与医生讨论治疗的风险和益处。这篇综述探讨了HAE临床环境中患者和医生的观点,特别是他们在整个疫情期间的沟通经验。我们讨论了SDM在HAE等罕见疾病中的重要性、影响有效沟通的因素以及潜在的解决方案。结论:由于以患者为中心的护理和SDM在罕见病中具有特殊的相关性,我们相信我们的研究结果可以在其他罕见病的管理中推广和应用。
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来源期刊
Clinical and Translational Allergy
Clinical and Translational Allergy Immunology and Microbiology-Immunology
CiteScore
7.50
自引率
4.50%
发文量
117
审稿时长
12 weeks
期刊介绍: Clinical and Translational Allergy, one of several journals in the portfolio of the European Academy of Allergy and Clinical Immunology, provides a platform for the dissemination of allergy research and reviews, as well as EAACI position papers, task force reports and guidelines, amongst an international scientific audience. Clinical and Translational Allergy accepts clinical and translational research in the following areas and other related topics: asthma, rhinitis, rhinosinusitis, drug hypersensitivity, allergic conjunctivitis, allergic skin diseases, atopic eczema, urticaria, angioedema, venom hypersensitivity, anaphylaxis, food allergy, immunotherapy, immune modulators and biologics, animal models of allergic disease, immune mechanisms, or any other topic related to allergic disease.
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