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Hamostaseologie 2020; 40(01): 097-104
DOI: 10.1055/s-0039-3402804
Review Article
Georg Thieme Verlag KG Stuttgart · New York

Health Care Transition of Adolescents and Young Adults with Haemophilia: the Situation in Germany and the Munich experience

Christoph Bidlingmaier
1   Centre for Development and Complex Chronic Diseases in Children (iSPZ Hauner), Haemophilia Unit, LMU Munich, Munich, Germany
2   Department of Paediatrics, Paediatric Haemophilia Centre, LMU Munich, Munich, Germany
,
Martin Olivieri
2   Department of Paediatrics, Paediatric Haemophilia Centre, LMU Munich, Munich, Germany
,
Freimut H. Schilling
3   Children's Hospital, Kantonsspital Luzern, Lucerne, Switzerland
,
Karin Kurnik
2   Department of Paediatrics, Paediatric Haemophilia Centre, LMU Munich, Munich, Germany
,
Isabell Pekrul
4   Department of Anaesthesiology, Ludwig-Maximilians University, Munich, Germany
5   Department of Transfusion Medicine, Cell Therapeutics and Haemostaseology, Ludwig-Maximilians University, Munich, Germany
› Author Affiliations
Further Information

Publication History

29 July 2019

04 November 2019

Publication Date:
28 January 2020 (online)

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Abstract

Patients suffering from haemophilia encounter various phases in life, in which individual needs, life situations, and self- and disease perception change rapidly. One of these phases spans from the beginning of puberty until early adulthood, in which individuals gain self-responsibility and reach independence and autonomy. In this challenging time that determines future health, adolescents and young adults need sustainable familiar and professional support. A change in health care team and treatment centre may expose adolescent patients to threats but also provides the possible opportunity to be well prepared. While there is emerging evidence that the so-called health care transition programmes are effective in maintaining quality of care in other disease areas, transition programmes for patients with haemophilia are still rare in Germany, and the evidence is limited. We describe the situation in Germany, discuss our experience in Munich and review some of the available guidance; we conclude that transition programmes should become a standard of care in haemophilia.

Zusammenfassung

Patienten mit Hämophilie durchlaufen verschiedene Lebensabschnitte, in denen sich ihre Bedürfnisse, Lebensumstände und ihr Blick auf die Erkrankung und sich selbst verändern. Eine dieser Phasen umfasst die Pubertät und den Übergang ins Erwachsenenalter. In dieser Zeit erlangen die Patienten Eigenverantwortung und streben nach Unabhängigkeit und Autonomie. Diese Phase ist herausfordernd und bestimmend für die gesundheitliche Zukunft. Daher benötigen die Patienten eine tragfähige familiäre und professionelle Unterstützung, um Ängsten zu begegnen und mögliche Chancen herauszuarbeiten. Die Effektivität von Transitions-Programmen wird bereits für viele Krankheitsbilder in der Literatur beschrieben, allerdings werden diese im Bereich der Hämophilie in Deutschland selten angewendet. Wir beschreiben die Situation in Deutschland, erläutern unsere Münchner Erfahrungen und besprechen einige der verfügbaren Empfehlungen aus der Literatur. Zusammenfassend sollten Transitions-Program Teil der Routinebehandlung bei Hämophilie werden.

Keywords

haemophilia - transition - medical - psychosocial

Schlüsselwörter

Hämophilie - Transition - medizinisch - psychosozial
 

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