Disease Severity, Activity, Impact, and Control and How to Assess Them in Patients with Hereditary Angioedema
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 with...
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doaj-58705acc28334df988a1370a48ba31662020-11-24T23:21:39ZengFrontiers Media S.A.Frontiers in Medicine2296-858X2017-12-01410.3389/fmed.2017.00212301257Disease Severity, Activity, Impact, and Control and How to Assess Them in Patients with Hereditary AngioedemaAnette Bygum0Paula Busse1Teresa Caballero2Marcus Maurer3HAE Centre Denmark, Department of Dermatology and Allergy Centre, Odense University Hospital, Odense, DenmarkIcahn School of Medicine at Mount Sinai, New York, NY, United StatesAllergy Department, Hospital La Paz Institute for Health Research (IdiPaz), CIBERER U754, Madrid, SpainDepartment of Dermatology and Allergy, Charité – Universitätsmedizin Berlin, Berlin, GermanyHereditary 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.http://journal.frontiersin.org/article/10.3389/fmed.2017.00212/fullhereditary angioedemaseverityactivityimpactburdenquality of life |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Anette Bygum Paula Busse Teresa Caballero Marcus Maurer |
spellingShingle |
Anette Bygum Paula Busse Teresa Caballero Marcus Maurer Disease Severity, Activity, Impact, and Control and How to Assess Them in Patients with Hereditary Angioedema Frontiers in Medicine hereditary angioedema severity activity impact burden quality of life |
author_facet |
Anette Bygum Paula Busse Teresa Caballero Marcus Maurer |
author_sort |
Anette Bygum |
title |
Disease Severity, Activity, Impact, and Control and How to Assess Them in Patients with Hereditary Angioedema |
title_short |
Disease Severity, Activity, Impact, and Control and How to Assess Them in Patients with Hereditary Angioedema |
title_full |
Disease Severity, Activity, Impact, and Control and How to Assess Them in Patients with Hereditary Angioedema |
title_fullStr |
Disease Severity, Activity, Impact, and Control and How to Assess Them in Patients with Hereditary Angioedema |
title_full_unstemmed |
Disease Severity, Activity, Impact, and Control and How to Assess Them in Patients with Hereditary Angioedema |
title_sort |
disease severity, activity, impact, and control and how to assess them in patients with hereditary angioedema |
publisher |
Frontiers Media S.A. |
series |
Frontiers in Medicine |
issn |
2296-858X |
publishDate |
2017-12-01 |
description |
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. |
topic |
hereditary angioedema severity activity impact burden quality of life |
url |
http://journal.frontiersin.org/article/10.3389/fmed.2017.00212/full |
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