Hamostaseologie 2019; 39(S 01): S1-S92
DOI: 10.1055/s-0039-1680117
SY12 Paediatric Haemophilia
Georg Thieme Verlag KG Stuttgart · New York

Changes in Hemophilia Treatment in Eastern Germany in the Last Decade - A Survey from the Kompetenznetz Hämorrhagische Diathese Ost (KHDO)

R. Mahn
1   Division of Hemostaseology, University Hospital Leipzig, Leipzig, Germany
,
K. Schilling
2   Divison of Hematology and Oncology, University Hospital Jena, Jena, Germany
,
R. Klamroth
3   Vivantes Hospital in Friedrichshain, Berlin, Germany
,
K. Kentouche
4   Department of Pediatrics, University Hospital Jena, Jena, Germany
,
V. Aumann
5   Department of Pediatrics, University Hospital Magdeburg, Magdeburg, Germany
,
L. Fischer
6   Department of Pediatrics, University Hospital Leipzig, Leipzig, Germany
,
S. Holzhauer
7   Department of Pediatric Hematology and Oncology, Charité University Medicine, Berlin, Germany
,
H. Sirb
8   Department of Pediatrics, DRK Hospital Lichtenstein, Lichtenstein, Germany
,
U. Scholz
9   Center of Coagulation Disorders, Leipzig, Germany
,
K. Trautmann
10   Department of Hematology and Oncology, University Hospital Dresden, Dresden, Germany
,
I. Halm-Heinrich
11   Department of Transfusion Medicine, University Hospital Magdeburg, Magdeburg, Germany
,
B. Krammer-Steiner
12   Department of Hematology and Oncology, Rostock South City Medical Center, Rostock, Germany
,
J. Koscielny
13   Hemophilia Center (EHCCC) with outpatient ambulance in the ambulance service (AGZ) of the Charité, Charité Universitätsmedizin, Berlin, Germany
,
U. Kreibisch
14   Hemophilia ambulance, Heinrich Braun Hospital, Zwickau, Germany
,
A. Pietrzak-Büttner
15   Paediatric Clinic, SRH Hospital, Suhl, Germany
,
M. Tregel
16   Institute of labor diagnostics, OGD GmbH MVZ, Neuruppin, Germany
,
R. Knöfler
17   Department of Pediatric Hematology and Oncology, University Hospital Dresden, Dresden, Germany
,
C. Pfrepper
1   Division of Hemostaseology, University Hospital Leipzig, Leipzig, Germany
,
Kompetenznetzwerk Hämorrhagische Diathese Ost › Author Affiliations
Further Information

Publication History

Publication Date:
13 February 2019 (online)

Also available at
 

Introduction: In 2005 the Kompetenznetz Hämorrhagische Diathese Ost a cooperation of hemophilia treaters in eastern Germany published epidemiologic data about treatment modalities and infections in patients with bleeding disorders. The aim of this study was to provide data about treatment modalities 10 years later.

Methods: Retrospective data on type of treatment, factor consumption, bleeding rate and prevalence of infections in 2015 were collected from patients` records.

Results: A total of 73 children and 167 adults with severe hemophilia A (HA) and 9 children and 26 adults with severe hemophilia B (HB) from 12 hemophilia centers were included. 98.8% of all children and 79.9% of all adults received prophylactic factor substitution. The proportion of patients receiving plasma derived factor concentrates was 53.7% in children and 49.2% in adults. Mean factor consumption in HA without active inhibitor was 166.705 IU in children and

228.287 IU in adults and in HB 105.200 IU in children and 160.160 IU in adults. Median annualized bleeding rate was 2 and median annualized joint bleeding rate was 0 in adults and children with severe hemophilia. In 2015 37.6% had a seroconversion of hepatitis C. The proportion of seroconverted patients with chronic active hepatitis C decreased from 63.8% in 2005 to 12.7% in 2015.

Conclusion: In 2015 the vast majority of patients had prophylactic factor substitution resulting in low bleeding rates. About 50% of all patients received plasma derived factor concentrates. Most patients with active hepatitis C were successfully treated in the last decade.