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Expert perspectives on hereditary angioedema: Key areas for advancements in care across the patient journey

BACKGROUND: Published literature documents the substantial burden of hereditary angioedema (HAE) with C1 inhibitor deficiency on the quality of life and work productivity of patients. However, despite advances in the field and the availability of guidelines to advise health care providers (HCP) on t...

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Autores principales: Banerji, Aleena, Baş, Murat, Bernstein, Jonathan A., Boccon-Gibod, Isabelle, Bova, Maria, Dempster, John, Grumach, Anete Sevciovic, Magerl, Markus, Poarch, Kimberly, Ferreira, Manuel Branco
Formato: Online Artículo Texto
Lenguaje:English
Publicado: OceanSide Publications, Inc. 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5244276/
https://www.ncbi.nlm.nih.gov/pubmed/27661998
http://dx.doi.org/10.2500/ar.2016.7.0165
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author Banerji, Aleena
Baş, Murat
Bernstein, Jonathan A.
Boccon-Gibod, Isabelle
Bova, Maria
Dempster, John
Grumach, Anete Sevciovic
Magerl, Markus
Poarch, Kimberly
Ferreira, Manuel Branco
author_facet Banerji, Aleena
Baş, Murat
Bernstein, Jonathan A.
Boccon-Gibod, Isabelle
Bova, Maria
Dempster, John
Grumach, Anete Sevciovic
Magerl, Markus
Poarch, Kimberly
Ferreira, Manuel Branco
author_sort Banerji, Aleena
collection PubMed
description BACKGROUND: Published literature documents the substantial burden of hereditary angioedema (HAE) with C1 inhibitor deficiency on the quality of life and work productivity of patients. However, despite advances in the field and the availability of guidelines to advise health care providers (HCP) on the diagnosis and management of HAE, there are still many challenges to overcome. For example, delayed diagnosis and misdiagnosis are common, and treatment practices vary worldwide. OBJECTIVE: An international expert panel was convened to consider opportunities for improvements that would benefit patients with HAE. METHODS: Based on professional and personal experiences, the experts developed schematics to describe the journey of patients through the following stages: (1) onset of symptoms and initial evaluation; (2) referral/diagnosis; and (3) management of HAE. More importantly, the panel identified key areas in which it was possible to optimize the support provided to patients and HCPs along this journey. RESULTS: Overall, this approach highlighted the need for wider dissemination of algorithms and scientific data to more effectively educate HCPs from multiple disciplines and the need for more research to inform appropriate treatment decisions. Furthermore, HAE awareness campaigns, accurate online information, and referral to patient advocacy groups were all considered helpful approaches to support patients. CONCLUSION: More detailed and widespread information on the diagnosis and management of HAE is needed and may lead to advancements in care throughout the journey of the patient with HAE.
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spelling pubmed-52442762017-01-23 Expert perspectives on hereditary angioedema: Key areas for advancements in care across the patient journey Banerji, Aleena Baş, Murat Bernstein, Jonathan A. Boccon-Gibod, Isabelle Bova, Maria Dempster, John Grumach, Anete Sevciovic Magerl, Markus Poarch, Kimberly Ferreira, Manuel Branco Allergy Rhinol (Providence) Articles BACKGROUND: Published literature documents the substantial burden of hereditary angioedema (HAE) with C1 inhibitor deficiency on the quality of life and work productivity of patients. However, despite advances in the field and the availability of guidelines to advise health care providers (HCP) on the diagnosis and management of HAE, there are still many challenges to overcome. For example, delayed diagnosis and misdiagnosis are common, and treatment practices vary worldwide. OBJECTIVE: An international expert panel was convened to consider opportunities for improvements that would benefit patients with HAE. METHODS: Based on professional and personal experiences, the experts developed schematics to describe the journey of patients through the following stages: (1) onset of symptoms and initial evaluation; (2) referral/diagnosis; and (3) management of HAE. More importantly, the panel identified key areas in which it was possible to optimize the support provided to patients and HCPs along this journey. RESULTS: Overall, this approach highlighted the need for wider dissemination of algorithms and scientific data to more effectively educate HCPs from multiple disciplines and the need for more research to inform appropriate treatment decisions. Furthermore, HAE awareness campaigns, accurate online information, and referral to patient advocacy groups were all considered helpful approaches to support patients. CONCLUSION: More detailed and widespread information on the diagnosis and management of HAE is needed and may lead to advancements in care throughout the journey of the patient with HAE. OceanSide Publications, Inc. 2016 /pmc/articles/PMC5244276/ /pubmed/27661998 http://dx.doi.org/10.2500/ar.2016.7.0165 Text en Copyright © 2016, OceanSide Publications, Inc., U.S.A. This publication is provided under the terms of the Creative Commons Public License ("CCPL" or "License"), in attribution 3.0 unported (Attribution Non-Commercial No Derivatives (CC BY-NC-ND)), further described at: http://creativecommons.org/licenses/by-nc-nd/3.0/legalcode. The work is protected by copyright and/or other applicable law. Any use of the work other then as authorized under this license or copyright law is prohibited.
spellingShingle Articles
Banerji, Aleena
Baş, Murat
Bernstein, Jonathan A.
Boccon-Gibod, Isabelle
Bova, Maria
Dempster, John
Grumach, Anete Sevciovic
Magerl, Markus
Poarch, Kimberly
Ferreira, Manuel Branco
Expert perspectives on hereditary angioedema: Key areas for advancements in care across the patient journey
title Expert perspectives on hereditary angioedema: Key areas for advancements in care across the patient journey
title_full Expert perspectives on hereditary angioedema: Key areas for advancements in care across the patient journey
title_fullStr Expert perspectives on hereditary angioedema: Key areas for advancements in care across the patient journey
title_full_unstemmed Expert perspectives on hereditary angioedema: Key areas for advancements in care across the patient journey
title_short Expert perspectives on hereditary angioedema: Key areas for advancements in care across the patient journey
title_sort expert perspectives on hereditary angioedema: key areas for advancements in care across the patient journey
topic Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5244276/
https://www.ncbi.nlm.nih.gov/pubmed/27661998
http://dx.doi.org/10.2500/ar.2016.7.0165
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