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Current practice of monitoring joint health in children and adolescents with hemophilia in Germany, Austria and Switzerland (GAS)

1University Medicine, Charite, Berlin, Germany, Berlin, Berlin, Germany, 2University Hospital Frankfurt, Goethe University, Frankfurt, Hessen, Germany, 3Institute of Experimental Hematology and Transfusion Medicine, University Hospital Bonn, Medical Faculty, University of Bonn, Germany, Bonn, Nordrhein-Westfalen, Germany, 4IPFW (Institute for Paediatric Research and Further Education) and, Haemophilia Treatment Centre for Children and Adolescents, Blaubeuren, Baden-Württemberg, Germany, Blaubeuren, Baden-Wurttemberg, Germany, 5Charité University Medicine, Charite, Berlin, Germany, Berlin, Berlin, Germany

Abstract Number: PB0244

Meeting: ISTH 2022 Congress

Theme: Pediatrics » Bleeding in Neonates and Children

Background: Treatment options for children with hemophilia have greatly improved, new treatment options, including gene therapy, emerged throughout the last years protecting from premature arthropathy and allowing an active life. Ultrasound scoring systems have been established1,2,3 as point of care methods for routine assessment of joint health to guide therapy or assess outcomes in clinical trials.

Aims: To gain information on techniques currently available and used to assess joint health including standardized physiotherapeutic examinations, MRI or ultrasound. To understand what prevents physicians to use ultrasound to regularly screen for arthropathy.

Methods: We electronically sent 17 questions to all members of the Pediatric working group of the Society of Thrombosis and Hemostasis (GTH).

Results: 24 physicians of at least 19 different pediatric hemophilia centers answered all questions. All physicians used several examination methods to assess joint health, 54% used standardized physiotherapist exams, 50% performed ultrasound and/or MRI. Most physicians performed those examinations based on clinical symptoms (n=13; 54%), not on a regular basis. The most commonly used ultrasound score was HEADUS (n= 10/12 performing ultrasound; 83%). 50% of physicians do not use standardized ultrasound examinations. Ultrasound examinations are mostly carried out by radiologists or treating physicians, (n=12; 50%) and (n=11; 46%) respectively. Reasons limiting use of ultrasound were incomplete training and limited resources (time, space, physicians). 50% of physicians see a need for more education on the subject. Symptoms were rated most influential for making therapy decisions, ultrasound and MRI examinations were deemed less important.

Conclusion(s): Standard of care to monitor joint health in children with hemophilia in GAS is still physical examination. Up to now, implementation of ultrasound as a regular screening tool is hampered by lack of training.

To cite this abstract in AMA style:

Reschke M, Königs C, Marquardt N, sigl-Krätzig M, Holzhauer S. Current practice of monitoring joint health in children and adolescents with hemophilia in Germany, Austria and Switzerland (GAS) [abstract]. https://abstracts.isth.org/abstract/current-practice-of-monitoring-joint-health-in-children-and-adolescents-with-hemophilia-in-germany-austria-and-switzerland-gas/. Accessed November 30, 2023.

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