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Benefits of a Disease Management Program for Sickle Cell Disease in Germany 2011–2019: The Increased Use of Hydroxyurea Correlates with a Reduced Frequency of Acute Chest Syndrome

Sickle Cell Disease (SCD) is the most common monogenic disorder globally but qualifies as a rare disease in Germany. In 2012, the German Society for Paediatric Oncology and Haematology (GPOH) mandated a consortium of five university hospitals to develop a disease management program for patients with...

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Autores principales: Kunz, Joachim B., Schlotmann, Andreas, Daubenbüchel, Andrea, Lobitz, Stephan, Jarisch, Andrea, Grosse, Regine, Cario, Holger, Oevermann, Lena, Hakimeh, Dani, Tagliaferri, Laura, Kulozik, Andreas E.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8509263/
https://www.ncbi.nlm.nih.gov/pubmed/34640578
http://dx.doi.org/10.3390/jcm10194543
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author Kunz, Joachim B.
Schlotmann, Andreas
Daubenbüchel, Andrea
Lobitz, Stephan
Jarisch, Andrea
Grosse, Regine
Cario, Holger
Oevermann, Lena
Hakimeh, Dani
Tagliaferri, Laura
Kulozik, Andreas E.
author_facet Kunz, Joachim B.
Schlotmann, Andreas
Daubenbüchel, Andrea
Lobitz, Stephan
Jarisch, Andrea
Grosse, Regine
Cario, Holger
Oevermann, Lena
Hakimeh, Dani
Tagliaferri, Laura
Kulozik, Andreas E.
author_sort Kunz, Joachim B.
collection PubMed
description Sickle Cell Disease (SCD) is the most common monogenic disorder globally but qualifies as a rare disease in Germany. In 2012, the German Society for Paediatric Oncology and Haematology (GPOH) mandated a consortium of five university hospitals to develop a disease management program for patients with SCD. Besides other activities, this consortium issued treatment guidelines for SCD that strongly favour the use of hydroxyurea and propagated these guidelines in physician and patient education events. In order to quantify the effect of these recommendations, we made use of claims data that were collected by the research institute (WIdO) of the major German insurance company, the Allgemeine Ortskrankenkasse (AOK), and of publicly accessible data collected by the Federal Statistical Office (Statistisches Bundesamt, Destatis). While the number of patients with SCD in Germany increased from approximately 2200 in 2011 to approximately 3200 in 2019, important components of the recently issued treatment guidelines have been largely implemented. Specifically, the use of hydroxyurea has more than doubled, resulting in a proportion of approximately 44% of all patients with SCD being treated with hydroxyurea in 2019. In strong negative correlation with the use of hydroxyurea, the frequency of acute chest syndromes decreased. Similarly, the proportion of patients who required analgesics and hospitals admissions declined. In sum, these data demonstrate an association between the dissemination of treatment guidelines and changes in clinical practice. The close temporal relationship between the increased use of hydroxyurea and the reduction in the incidence of acute chest syndrome in a representative population-based analysis implies that these changes in clinical practice contributed to an improvement in key measures of disease activity.
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spelling pubmed-85092632021-10-13 Benefits of a Disease Management Program for Sickle Cell Disease in Germany 2011–2019: The Increased Use of Hydroxyurea Correlates with a Reduced Frequency of Acute Chest Syndrome Kunz, Joachim B. Schlotmann, Andreas Daubenbüchel, Andrea Lobitz, Stephan Jarisch, Andrea Grosse, Regine Cario, Holger Oevermann, Lena Hakimeh, Dani Tagliaferri, Laura Kulozik, Andreas E. J Clin Med Article Sickle Cell Disease (SCD) is the most common monogenic disorder globally but qualifies as a rare disease in Germany. In 2012, the German Society for Paediatric Oncology and Haematology (GPOH) mandated a consortium of five university hospitals to develop a disease management program for patients with SCD. Besides other activities, this consortium issued treatment guidelines for SCD that strongly favour the use of hydroxyurea and propagated these guidelines in physician and patient education events. In order to quantify the effect of these recommendations, we made use of claims data that were collected by the research institute (WIdO) of the major German insurance company, the Allgemeine Ortskrankenkasse (AOK), and of publicly accessible data collected by the Federal Statistical Office (Statistisches Bundesamt, Destatis). While the number of patients with SCD in Germany increased from approximately 2200 in 2011 to approximately 3200 in 2019, important components of the recently issued treatment guidelines have been largely implemented. Specifically, the use of hydroxyurea has more than doubled, resulting in a proportion of approximately 44% of all patients with SCD being treated with hydroxyurea in 2019. In strong negative correlation with the use of hydroxyurea, the frequency of acute chest syndromes decreased. Similarly, the proportion of patients who required analgesics and hospitals admissions declined. In sum, these data demonstrate an association between the dissemination of treatment guidelines and changes in clinical practice. The close temporal relationship between the increased use of hydroxyurea and the reduction in the incidence of acute chest syndrome in a representative population-based analysis implies that these changes in clinical practice contributed to an improvement in key measures of disease activity. MDPI 2021-09-30 /pmc/articles/PMC8509263/ /pubmed/34640578 http://dx.doi.org/10.3390/jcm10194543 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Kunz, Joachim B.
Schlotmann, Andreas
Daubenbüchel, Andrea
Lobitz, Stephan
Jarisch, Andrea
Grosse, Regine
Cario, Holger
Oevermann, Lena
Hakimeh, Dani
Tagliaferri, Laura
Kulozik, Andreas E.
Benefits of a Disease Management Program for Sickle Cell Disease in Germany 2011–2019: The Increased Use of Hydroxyurea Correlates with a Reduced Frequency of Acute Chest Syndrome
title Benefits of a Disease Management Program for Sickle Cell Disease in Germany 2011–2019: The Increased Use of Hydroxyurea Correlates with a Reduced Frequency of Acute Chest Syndrome
title_full Benefits of a Disease Management Program for Sickle Cell Disease in Germany 2011–2019: The Increased Use of Hydroxyurea Correlates with a Reduced Frequency of Acute Chest Syndrome
title_fullStr Benefits of a Disease Management Program for Sickle Cell Disease in Germany 2011–2019: The Increased Use of Hydroxyurea Correlates with a Reduced Frequency of Acute Chest Syndrome
title_full_unstemmed Benefits of a Disease Management Program for Sickle Cell Disease in Germany 2011–2019: The Increased Use of Hydroxyurea Correlates with a Reduced Frequency of Acute Chest Syndrome
title_short Benefits of a Disease Management Program for Sickle Cell Disease in Germany 2011–2019: The Increased Use of Hydroxyurea Correlates with a Reduced Frequency of Acute Chest Syndrome
title_sort benefits of a disease management program for sickle cell disease in germany 2011–2019: the increased use of hydroxyurea correlates with a reduced frequency of acute chest syndrome
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8509263/
https://www.ncbi.nlm.nih.gov/pubmed/34640578
http://dx.doi.org/10.3390/jcm10194543
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