Disease Severity, Activity, Impact, and Control and How to Assess Them in Patients with Hereditary Angioedema

Anette Bygum, Paula Busse, Teresa Caballero, Marcus Maurer

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Abstrakt

Hereditary angioedema (HAE) is a group of rare, potentially life-threatening, and frequently debilitating diseases characterized by recurrent, and often with an unpredictable onset, of swelling attacks. HAE is heterogeneous, with considerable differences between its subtypes, patients, and even within the same patient over time. During the past few years, several new on demand and prophylactic therapies have become available for HAE, allowing for individualized treatment. Therefore, to optimize HAE management, it is important to determine in all patients, the severity of their attacks, their disease activity, its therapeutic control, and its impact on their quality of life. In this manuscript, we review the existing tools to assess these aspects of HAE management, many of which are patient-reported outcome instruments. Also, we outline the current gaps of knowledge and what tools are still missing to allow for a comprehensive assessment of all patients with HAE including children.

OriginalsprogEngelsk
Artikelnummer212
TidsskriftFrontiers in Medicine
Vol/bind4
Udgave nummerDEC
Antal sider7
ISSN2296-858X
DOI
StatusUdgivet - 2017

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