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Living with a “hemophilia‐free mind” – The new ambition of hemophilia care?
Despite the numerous and groundbreaking therapeutic advances made in the field of hemophilia over the past decades and particularly in recent years, hemophilia remains a disease that has a major impact on the daily lives of our patients, through the multiple complications and burdensome treatments i...
Autores principales: | , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley and Sons Inc.
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8331948/ https://www.ncbi.nlm.nih.gov/pubmed/34377886 http://dx.doi.org/10.1002/rth2.12567 |
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author | Krumb, Evelien Hermans, Cedric |
author_facet | Krumb, Evelien Hermans, Cedric |
author_sort | Krumb, Evelien |
collection | PubMed |
description | Despite the numerous and groundbreaking therapeutic advances made in the field of hemophilia over the past decades and particularly in recent years, hemophilia remains a disease that has a major impact on the daily lives of our patients, through the multiple complications and burdensome treatments it imposes. The disease burden is not only physical but also psychological and is difficult to evaluate solely by questionnaires and scores. In this article, we propose to examine the absence of psychological burden and of permanent thoughts about the disease and its complications in people with hemophilia as a new ambition that should guide hemophilia care and research in the future. |
format | Online Article Text |
id | pubmed-8331948 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-83319482021-08-09 Living with a “hemophilia‐free mind” – The new ambition of hemophilia care? Krumb, Evelien Hermans, Cedric Res Pract Thromb Haemost Forum Despite the numerous and groundbreaking therapeutic advances made in the field of hemophilia over the past decades and particularly in recent years, hemophilia remains a disease that has a major impact on the daily lives of our patients, through the multiple complications and burdensome treatments it imposes. The disease burden is not only physical but also psychological and is difficult to evaluate solely by questionnaires and scores. In this article, we propose to examine the absence of psychological burden and of permanent thoughts about the disease and its complications in people with hemophilia as a new ambition that should guide hemophilia care and research in the future. John Wiley and Sons Inc. 2021-08-03 /pmc/articles/PMC8331948/ /pubmed/34377886 http://dx.doi.org/10.1002/rth2.12567 Text en © 2021 The Authors. Research and Practice in Thrombosis and Haemostasis published by Wiley Periodicals LLC on behalf of International Society on Thrombosis and Haemostasis (ISTH). https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made. |
spellingShingle | Forum Krumb, Evelien Hermans, Cedric Living with a “hemophilia‐free mind” – The new ambition of hemophilia care? |
title | Living with a “hemophilia‐free mind” – The new ambition of hemophilia care? |
title_full | Living with a “hemophilia‐free mind” – The new ambition of hemophilia care? |
title_fullStr | Living with a “hemophilia‐free mind” – The new ambition of hemophilia care? |
title_full_unstemmed | Living with a “hemophilia‐free mind” – The new ambition of hemophilia care? |
title_short | Living with a “hemophilia‐free mind” – The new ambition of hemophilia care? |
title_sort | living with a “hemophilia‐free mind” – the new ambition of hemophilia care? |
topic | Forum |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8331948/ https://www.ncbi.nlm.nih.gov/pubmed/34377886 http://dx.doi.org/10.1002/rth2.12567 |
work_keys_str_mv | AT krumbevelien livingwithahemophiliafreemindthenewambitionofhemophiliacare AT hermanscedric livingwithahemophiliafreemindthenewambitionofhemophiliacare |