Hämostaseologie, Table of Contents Hamostaseologie 2017; 37(02): 107-116DOI: 10.5482/HAMO-15-02-0007 Original article Schattauer GmbH Health promotion for young patients with haemophilia Counselling, adjuvant exercise therapy and school sportsGesundheitsförderung für Kinder und Jugendliche mit HämophilieGesundheitsberatung, adjuvante Bewegungs - therapie und Schulsport Judith Sondermann * 1 Department of Sports Medicine, Friedrich-Schiller-University of Jena, Germany , Marco Herbsleb * 1 Department of Sports Medicine, Friedrich-Schiller-University of Jena, Germany , Frank-Detlef Stanek 2 GP’s surgery, Jena, Germany , Holger Gabriel 1 Department of Sports Medicine, Friedrich-Schiller-University of Jena, Germany , Karim Kentouche 3 Clinic for children and youth medicine, University Hospital, Jena, Germany › Author Affiliations Recommend Article Abstract Full Text PDF Download Keywords KeywordsHaemophilia - exercise therapy - self-competence - health counselling Schlüsselwörter SchlüsselwörterHämophilie - Bewegungstherapie - Selbstkompetenz - Gesundheitsberatung References References 1 Gabriel HW. Leistungsoptimierung in der sportmedizinischen Gesundheitssprechstunde. In: Baumbach-Knopf C, Achatz J, Knoepffler N. editors. Facetten der Ethik. 15. Würzburg: Königshausen & Neumann; 2013: 141-60. 2 Rieger H-M. Gesundheit – Erkundungen zu einem menschenangemessenen Konzept. Leipzig: Evangelische Verlagsanstalt; 2013 3 Blair SN, Kampert JB, Kohl HW. et al. Influences of cardiorespiratory fitness and other precursors on cardiovascular disease and all-cause mortality in men and women. JAMA 1996; 276: 205-210. 4 Helmrich SP, Ragland DR, Leung RW, Paffenbarger RS. Physical activity and reduced occurrence of non-insulin-dependent diabetes mellitus. N Engl J Med 1991; 325: 147-152. 5 Haskell WL. J.B. Wolffe Memorial Lecture. Health consequences of physical activity: understanding and challenges regarding dose-response. Med Sci Sports Exerc 1994; 26: 649-660. 6 Schoenmakers MA, Gulmans VA, Helders PJ, van den Berg HM. Motor performance and disability in Dutch children with haemophilia: a comparison with their healthy peers. Haemophilia 2001; 07: 293-298. 7 Manco-Johnson MJ, Riske B, Kasper CK. Advances in care of children with hemophilia. Semin Thromb Hemost 2003; 29: 585-594. 8 Dolan G. The challenge of an ageing haemophilic population. Haemophilia 2010; 16 (Suppl. 05) 11-16. 9 Wittmeier K, Mulder K. Enhancing lifestyle for individuals with haemophilia through physical activity and exercise: the role of physiotherapy Haemophilia. 2007; 13 (Suppl. 02) 31-37. 10 Mulder K, Cassis F, Seuser DR. et al. Risks and benefits of sports and fitness activities for people with haemophilia. Haemophilia 2004; 10 (Suppl. 04) 161-163. 11 Engelbert RH, Plantinga M, Van der Net J. et al. Aerobic capacity in children with hemophilia. J Pediatr 2008; 152: 833-838. 12 Egan B, Eldridge B, Barnes C, Wolfe R. Are boys with severe haemophilia as physically active as the normal population?. Haemophilia 2006; 12 (Suppl. 02) 103-106. 13 Van der Net J, Vos RC, Engelbert RH. et al. Physical fitness, functional ability and quality of life in children with severe haemophilia: a pilot study. Haemophilia 2006; 12: 494-499. 14 Falk B, Portal S, Tiktinsky R. et al. Bone properties and muscle strength of young haemophilia patients. Haemophilia 2005; 11: 380-386. 15 Seuser A, Kurme A, Trunz E. et al. Fit for Life – Fitness Levels of Young Hemophiliacs Today. In Scharrer I, Schramm W. editors. 34th Hemophilia Symposium Hamburg 2003. 34. Berlin, Heidelberg: Springer-Verlag; 2005: 232-7. 16 Plachta-Danielzik S, Gehrke MI, Kehden B. et al. Body fat percentiles for German children and adolescents. Obesity facts 2012; 05: 77-90. 17 Kromeyer-Hauschild K, Wabitsch M, Kunze D. et al. Perzentile für den Body-mass- Index für das Kindes-und Jugend-alter unter Heranziehung verschiedener deutscher Stichproben. Monatsschr Kinderheilkd 2001; 149: 807-818. 18 AGA. Arbeitsgemeinschaft Adipositas im Kindesund Jugendalter: (S2-) Leitlinie 2010 der AGA zur Therapie der Adipositas im Kindes-und Jugendalter. 2010 [24.05.2011]. http://www.a-g-a.de/Leitlinie 19 Feldman BM, Funk SM, Bergstrom BM. et al. Validation of a new pediatric joint scoring system from the International Hemophilia Prophylaxis Study Group: Validity of the hemophilia joint health score. Arthritis care & research 2011; 63: 223-230. 20 Hilliard P, Funk S, Zourikian N, Bergstrom BM, Bradley CS, McLimont M. et al. Hemophilia joint health score reliability study. Haemophilia 2006; 12: 518-525. 21 Kohen-Raz R. Application of tetra-ataxiametric posturography in clinical and developmental diagnosis. Percept Mot Skills 1991; 73: 635-656. 22 Hilberg T, Herbsleb M, Gabriel HHW. et al. Proprioception and isometric muscular strength in haemophilic subjects. Haemophilia 2001; 07: 582-588. 23 Krishnamurthy R, Mohanty P, Kumar D, Niranjan S. Bleed frequency, proprioception and isometric muscle strength in haemophilic arthropathy. Haemophilia 2004; 10 (Suppl. 03) 132. 24 Seuser A, Kurme A, Wallny T. et al. How to advise young hemophiliacs to find the right sport?. A new and safe algorithm! Haemophilia 2004; 10: 104. 25 Stephensen D, Winter M. Defects in standing balance in children with severe haemophilia A. Haemophilia 2002; 08: 479. 26 Schwesig R, Lauenroth A, Müller A. et al. Parametrisierung posturaler Subsysteme mit Posturografie. Manuelle Medizin 2006; 44: 376-384. 27 Herbsleb M, Tutzschke R, Czepa D. et al. Isometrische Maximalkraftmessungen der Quadrizepsmuskulatur. Durchfuhrbarkeit und Reliabilitat bei Patienten mit Hamophilie. Hämostaseologie 2010; 30 (Suppl. 01) S97-S103. 28 Godfrey S. Exercise testing in children. Applications in health and disease. Philadelphia: Saunders; 1974 29 Ten Harkel AD, Takken T, Van Osch-Gevers M, Helbing WA. Normal values for cardiopulmonary exercise testing in children. Eur J Cardiovasc Prev Rehabil 2011; 18: 48-54. 30 Radoschewski M. Gesundheitsbezogene LebensqualitÄt – Konzepte und Maße. Bundesgesundheitsbl – Gesundheitsforsch – Gesundheitsschutz 2000; 43: 165-!89. 31 Bullinger M. Quality-of-Life – Definition, Conceptualization and Implications – a Methodologists View. Theor Surg 1991; 06: 143-!$8. 32 von Mackensen S, Bullinger M, Haemo-Qo LG. Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL). Haemophilia 2004; 10 (Suppl. 01) 17-25. 33 Ravens-Sieberer U, Bullinger M. Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Qual Life Res 1998; 07: 399-407. 34 Goodman R. The Strengths and Difficulties Questionnaire: a research note. J Child Psychol Psychiatry 1997; 38: 581-586. 35 Douma-van Riet DC, Engelbert RH, van Genderen FR. et al. Physical fitness in children with haemophilia and the effect of overweight. Haemophilia 2009; 15: 519-527. 36 Bladen M, Main E, Hubert N. et al. Can the Haemophilia Joint Health Score (HJHS) identify differences in joint status in boys with severe haemophilia receiving prophylaxis?. Haemophilia 2010; 16 (Suppl. 04) 113. 37 Saulyte STrakymiene, Ingerslev J, Rageliene L. Utility of the Haemophilia Joint Health Score in study of episodically treated boys with severe haemophilia A and B in Lithuania. Haemophilia 2010; 16: 479-486. 38 Lobelo F, Pate RR, Dowda M. et al. Validity of cardiorespiratory fitness criterion-referenced standards for adolescents. Med Sci Sports Exerc 2009; 41: 1222-1229. 39 Cureton KJ, Warren GL. Criterion-referenced standards for youth health-related fitness tests: a tutorial. Res Q Exerc Sport 1990; 61: 7-19. 40 Blair SN, Clark DB, Cureton KJ, Powell KE. Exercise and fitness in childhood: Implications for a lifetime of health. In: Gisolfi CV, Lamb DL. editors. Perspectives in exercise science and sports medicine: Youth, exercise and sport. Youth, exercise and sport. Indianapolis: Benchmark Press; 1989: 401-22. 41 Broderick CR, Herbert RD, Latimer J. et al. Association between physical activity and risk of bleeding in children with hemophilia. Jama-J Am Med Assoc 2012; 308: 1452-1459.