[1. Manco-Johnson MJ, Abshire TC, Shapiro AD, et al. Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia. N Engl J Med 2007; 357: 535-44.10.1056/NEJMoa06765917687129]Search in Google Scholar
[2. Liesner RJ, Khair K, Hann IM. The impact of prophyactic treatment on children with severe haemophilia. Br J Haematol 1996; 92: 973-8.10.1046/j.1365-2141.1996.420960.x8616096]Search in Google Scholar
[3. Srivastava A, Brewer AK, Mauser-Bunschoten EP, et al. Guidelines for the management of hemophilia. Haemophilia 2013; 19(1): e1-47.10.1111/j.1365-2516.2012.02909.x22776238]Open DOISearch in Google Scholar
[4. Richards M, Williams M, Chalmers E, et al. A United Kingdom Haemophilia Centre Doctors' Organization guideline approved by the British Committee for Standards in Haematology: guideline on the use of prophylactic factor VIII concentrate in children and adults with severe haemophilia A. Br J Haematol 2010; 149: 498-507.10.1111/j.1365-2141.2010.08139.x20230411]Search in Google Scholar
[5. UKHDCO. Annual report 2012 & bleeding disorder statistics for the financial year 2011/12. A report from the UKHCDO and NHD. Available at http://support@ukhcdo.org.]Search in Google Scholar
[6. Feldman BM, Funk S, 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 (HJHS). Arthritis Care & Research 2011; 63: 223-30.10.1002/acr.2035320862683]Search in Google Scholar
[7. Bladen M, Main E, Hubert N, et al. Factors affecting the Haemophilia Joint Health Score in children with severe haemophilia. Haemophilia 2013; 19: 626-31.10.1111/hae.1210823534671]Open DOISearch in Google Scholar
[8. Hilliard P, Funk S, Zourikian N. Hemophilia joint health score reliability study. Haemophilia 2006; 12: 518-25.10.1111/j.1365-2516.2006.01312.x16919083]Search in Google Scholar
[9. Doward LC, McKenna SP, Defining Patient-Reported Outcomes. Value in Health 2004; 7(S1): S4-S8.10.1111/j.1524-4733.2004.7s102.x15367236]Search in Google Scholar
[10. Groen WG, van der Net J, Helders PJ, Fischer K. Development and preliminary testing of a Paediatric Version of the Haemophilia Activities List (pedhal). Haemophilia 2010; 16: 281-9.10.1111/j.1365-2516.2009.02136.x19906160]Search in Google Scholar
[11. Groen W, Van Der Net J, Lacatusu AM, Serban M, et al. Functional limitations in Romanian children with haemophilia; further testing of psychometric properties of the Paediatric Haemophilia Activities List. Haemophilia 2103; 19: e116-12510.1111/hae.1209023374095]Search in Google Scholar
[12. von Mackensen S, Czepa D, Herbsleb M, Hilberg T. Development and validation of a new questionnaire for the assessment of subjective physical performance in adult patients with haemophilia--the HEP-Test-Q. Haemophilia 2010; 16: 170-8.10.1111/j.1365-2516.2009.02112.x19845778]Search in Google Scholar
[13. von Mackensen S, Bullinger M; Haemo-QoL Group. Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL).Haemophilia 2004; 10 Suppl 1: 17-25.10.1111/j.1355-0691.2004.00875.x14987245]Search in Google Scholar
[14. Pollak E, Mühlan H, von Mackensen S, Bullinger M; HAEMO-QOL GROUP. The Haemo-QoL Index: developing a short measure for health-related quality of life assessment in children and adolescents with haemophilia. Haemophilia 2006; 12: 384-92.10.1111/j.1365-2516.2006.01292.x16834738]Open DOISearch in Google Scholar
[15. Department of Health. Equity and Excellence: Liberating the NHS. DoH, July 2010.]Search in Google Scholar
[16. Tinetti ME, Basch E. Patients’ responsibility to participate in decision-making and research. JAMA 2013; 309: 2331-2.10.1001/jama.2013.559223700165]Search in Google Scholar