86 Chapter 3 REFERENCES 1. Sharathkumar AA, Pipe SW. Bleeding disorders. Pediatr Rev. 2008;29(4):121-29. doi:10.1542/pir.29-4-121 2. Acharya SS, Coughlin A, Dimichele DM, North American Rare Bleeding Disorder Study G. Rare Bleeding Disorder Registry: deficiencies of factors II, V, VII, X, XIII, fibrinogen and dysfibrinogenemias. J Thromb Haemost. 2004;2(2):248-56. doi:10.1111/j.1538-7836.2003.t01-1-00553.x 3. Bolton-Maggs PH, Chalmers EA, Collins PW, et al. A review of inherited platelet disorders with guidelines for their management on behalf of the UKHCDO. Br J Haematol. 2006;135(5):603-33. doi:10.1111/j.1365-2141.2006.06343.x 4. Palla R, Peyvandi F, Shapiro AD. Rare bleeding disorders: diagnosis and treatment. Blood. 2015;125(13):2052-61. doi:10.1182/blood-2014-08-532820 5. Atiq F, Saes JL, Punt MC, et al. Major differences in clinical presentation, diagnosis and management of men and women with autosomal inherited bleeding disorders. E Clinical Medicine. 2021;32:100726. doi:10.1016/j.eclinm.2021.100726 6. Porter ME, Lee TH. The strategy that will fix health care. Harv Bus Rev. 2013;91(10):1-19. 7. Elf M, Flink M, Nilsson M, Tistad M, von Koch L, Ytterberg C. The case of valuebased healthcare for people living with complex long-term conditions. BMC Health Serv Res. 2017;17(1):24. doi:10.1186/s12913-016-1957-6 8. Porter ME, Larsson S, Lee TH. Standardizing Patient Outcomes Measurement. N Engl J Med. 2016;374(6):504-6. doi:10.1056/NEJMp1511701 9. Porter ME, Teisberg EO. How physicians can change the future of health care. JAMA. 2007;297(10):1103-11. doi:10.1001/jama.297.10.1103 10. Teisberg E, Wallace S, O'Hara S. Defining and Implementing Value-Based Health Care: A Strategic Framework. Acad Med. 2020;95(5):682-685. doi:10.1097/ ACM.0000000000003122 11. O'Mahony B, Dolan G, Nugent D, Goodman C, International Haemophilia Access Strategy C. Patient-centred value framework for haemophilia. Haemophilia. 2018;24(6):873-879. doi:10.1111/hae.13456 12. 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 13. Dover S, Blanchette VS, Srivastava A, Fischer K, Abad A, Feldman BM. Clinical outcomes in hemophilia: Towards development of a core set of standardized outcome measures for research. Res Pract Thromb Haemost. 2020;4(4):652-658. doi:10.1002/rth2.12331 14. van Hoorn ES, Houwing ME, Al Arashi W, et al. Patient-reported outcomes in autosomal inherited bleeding disorders: A systematic literature review. Haemophilia. 2022;28(2):197-214. doi:10.1111/hae.14492 15. 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 16. Herrera-Escobar JP, Price MA, Reidy E, et al. Core Outcome Measures for Research in Traumatic Injury Survivors: The NTRAP Modified Delphi Consensus Study. Journal of Trauma and Acute Care Surgery. 2022;doi:10.1097/ ta.0000000000003546
RkJQdWJsaXNoZXIy MTk4NDMw