18 Chapter 1 31. Allen D, Gillen E, Rixson L. Systematic review of the effectiveness of integrated care pathways: what works, for whom, in which circumstances? Int J Evid Based Healthc. 2009;7(2):61-74. doi:10.1111/j.1744-1609.2009.00127.x 32. Westerink HJ, Garvelink MM, van Uden-Kraan CF, et al. Evaluating patient participation in value-based healthcare: Current state and lessons learned. Health Expect. 2024;27(1):e13945. doi:10.1111/hex.13945 33. Damman OC, Jani A, de Jong BA, et al. The use of PROMs and shared decisionmaking in medical encounters with patients: An opportunity to deliver valuebased health care to patients. J Eval Clin Pract. 2020;26(2):524-540. doi:10.1111/ jep.13321 34. Dronkers EAC, Baatenburg de Jong RJ, van der Poel EF, Sewnaik A, Offerman MPJ. Keys to successful implementation of routine symptom monitoring in head and neck oncology with "Healthcare Monitor" and patients' perspectives of quality of care. Head Neck. 2020;42(12):3590-3600. doi:10.1002/hed.26425 35. World Federation of Hemophilia. Report on the Annual Global Survey 2020. 2021. https://www1.wfh.org/publications/files/pdf-2045.pdf 36. Hassan S, van Balen EC, Smit C, et al. Health and treatment outcomes of patients with hemophilia in the Netherlands, 1972-2019. J Thromb Haemost. 2021;19(10):2394-2406. doi:10.1111/jth.15424 37. van Balen EC, O'Mahony B, Cnossen MH, et al. Patient-relevant health outcomes for hemophilia care: Development of an international standard outcomes set. Res Pract Thromb Haemost. 2021;5(4):e12488. doi:10.1002/rth2.12488 38. Santagostino E, Dougall A, Jackson M, et al. Comprehensive care of hemophilia. 3rd ed. WFH; 2020. Guidelines for the Management of Hemophilia. 39. O'Hara J, Walsh S, Camp C, et al. The impact of severe haemophilia and the presence of target joints on health-related quality-of-life. Health Qual Life Outcomes. 2018;16(1):84. doi:10.1186/s12955-018-0908-9 40. Sharathkumar AA, Carcao M. Clinical advances in hemophilia management. Pediatr Blood Cancer. 2011;57(6):910-20. doi:10.1002/pbc.23193 41. Mannucci PM. Hemophilia therapy: the future has begun. Haematologica. 2020;105(3):545-553. doi:10.3324/haematol.2019.232132 42. Sharathkumar AA, Pipe SW. Bleeding disorders. Pediatr Rev. 2008;29(4):121-29. doi:10.1542/pir.29-4-121 43. Nogami K, Shima M. Current and future therapies for haemophilia—Beyond factor replacement therapies. Br J Haematol. 2023;200(1):23-34. doi:10.1111/bjh.18379 44. Bauer KA. Current challenges in the management of hemophilia. Vol. 21. 2015:S11222. Am J Manag Care. 45. Fogarty H, Doherty D, O'Donnell JS. New developments in von Willebrand disease. Br J Haematol. 2020;191(3):329-339. doi:10.1111/bjh.16681 46. Denis CV, Susen S, Lenting PJ. von Willebrand disease: what does the future hold? Blood. 2021;137(17):2299-2306. doi:10.1182/blood.2020008501 47. Leebeek FW, Eikenboom JC. Von Willebrand's Disease. N Engl J Med. 2016;375(21):2067-2080. doi:10.1056/NEJMra1601561 48. Weyand AC, Flood VH. Von Willebrand Disease: Current Status of Diagnosis and Management. Hematol Oncol Clin North Am. 2021;35(6):1085-1101. doi:10.1016/j. hoc.2021.07.004 49. Freson K, Wijgaerts A, van Geet C. Update on the causes of platelet disorders and functional consequences. Int J Lab Hematol. 2014;36(3):313-325. doi:10.1111/ijlh.12213
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