Health promotion for young patients with haemophilia

Summary

The haemophilia treatment centre of the Clinic for Children and Youth Medicine in Jena extends medical care by health-promotion measures, namely: health counselling, adjuvant exercise therapy and school sports. In addition to the regular medical checks at the treatment centre patients are examined regarding physical fitness, joint situation, quality of life in general and disease-specific manner, as well as psycho-social and nutritional behaviour. Findings and medical results of the examinations are integrated into an individual advice on therapy, school sports, and health recommendations. This aimed at strengthening health-related resources and minimizing potential injuries. First long-term evaluation shows an increase of activity behaviour and physical fitness without increasing bleeding rate and maintained joint function. Conclusion: Combining functional prevention diagnostics and individual health counselling shows signs of improved patient’s health knowledge, self-competence and physical fitness.

Zusammenfassung

Das Behandlungskonzept am Hämophilie-Behandlungszentrum der Kinder- und Jugendklinik in Jena wurde um gesundheitsförderliche Maßnahmen der Gesundheitsberatung, adjuvanten Bewegungstherapie und des Schulsports erweitert. Begleitend zur turnusmäßigen Untersuchung werden Patienten zusätzlich hinsichtlich körperlicher Leistungs - fähigkeit, aktueller Gelenksituation, allgemeiner und krankheitsspezifischer Lebensqualität sowie psychosozialen Verhaltens untersucht. Ferner wird das Ernährungsverhalten der Patienten erfasst und eine befundbasierte Gesundheitsberatung angeboten. Die Ergebnisse fließen zusammen mit den klinischen Befunden in individuelle Therapie-, Schulsport- und Gesundheitsempfehlungen ein. Eine erste Längsschnittauswertung weist auf eine Zunahme des Aktivitätsverhaltens und der körperlichen Leistungsfähigkeit bei gleichzeitig stabiler Blutungsrate und Erhaltung der Gelenkfunktion hin. Schlussfolgerung: Die Kombination von funktioneller Präventionsdiagnostik und individueller Gesundheitsberatung mit besonderer Förderung des Gesundheitswissens, der Selbstkompetenz und der körperlichen Aktivität haben sich bislang bewährt.

Keywords

Haemophilia - exercise therapy - self-competence - health counselling

Schlüsselwörter

Hämophilie - Bewegungstherapie - Selbstkompetenz - Gesundheitsberatung

^* These authors contributed equally to this study.

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