Shannon van Hoorn

235 General discussion 8 REFERENCES 1. van der Nat PB. The new strategic agenda for value transformation. Health Serv Manage Res. 2021;35(3):189-193. doi:10.1177/09514848211011739 2. Steinmann G, Delnoij D, van de Bovenkamp H, Groote R, Ahaus K. Expert consensus on moving towards a value-based healthcare system in the Netherlands: a Delphi study. BMJ Open. 2021;11(4):e043367. doi:10.1136/bmjopen-2020-043367 3. Programma Uitkomstgerichte Zorg. Leren en verbeteren. Programma Uitkomstgerichte Zorg. Accessed February 6th, 2024. https://www. uitkomstgerichtezorg.nl/themas/leren-en-veranderen 4. Dutch Ministry of Health Welfare and Sports. Integraal Zorgakkoord: Samen werken aan gezonde zorg. 2022:1-117. https://www.rijksoverheid.nl/documenten/ rapporten/2022/09/16/integraal-zorgakkoord-samen-werken-aan-gezonde-zorg 5. 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 6. van Hoorn ES, Lingsma HF, Cnossen MH, Gouw SC, for the SYMPHONY consortium. Patient-relevant health outcomes for von Willebrand disease, platelet function disorders, and rare bleeding disorders: a Delphi study. Res Pract Thromb Haemost. 2023;7(7):102201. doi:10.1016/j.rpth.2023.102201 7. van Hoorn ES, Teela L, Kuijlaars IAR, et al. Harmonizing patient-reported outcome measurements in inherited bleeding disorders with PROMIS. Haemophilia. 2022;29(1):357-361. doi:10.1111/hae.14694 8. Oude Voshaar M, Terwee CB, Haverman L, et al. Development of a standard set of PROs and generic PROMs for Dutch medical specialist care. Qual Life Res. 2023;32(6):1595-1605. doi:10.1007/s11136-022-03328-3 9. Oladapo AO, Epstein JD, Williams E, Ito D, Gringeri A, Valentino LA. Healthrelated quality of life assessment in haemophilia patients on prophylaxis therapy: a systematic review of results from prospective clinical trials. Haemophilia. 2015;21(5):e344-e358. doi:10.1111/hae.12759 10. Manco-Johnson MJ, Warren BB, Buckner TW, Funk SM, Wang M. Outcome measures in Haemophilia: Beyond ABR (Annualized Bleeding Rate). Haemophilia. 2021;27 Suppl 3(S3):87-95. doi:10.1111/hae.14099 11. Gringeri A, Von Mackensen S. Quality of life in haemophilia. Haemophilia. 2008;14(s3):19-25. doi:10.1111/j.1365-2516.2008.01709.x 12. Kuijlaars IAR, Teela L, van Vulpen LFD, et al. Generic PROMIS item banks in adults with hemophilia for patient-reported outcome assessment: Feasibility, measurement properties, and relevance. Res Pract Thromb Haemost. 2021;5(8):e12621. doi:10.1002/rth2.12621 13. van Balen EC, Haverman L, Hassan S, et al. Validation of PROMIS Profile-29 in adults with hemophilia in the Netherlands. J Thromb Haemost. 2021;19(11):26872701. doi:10.1111/jth.15454 14. Werkgroep Generieke PROMs. Adviesrapport set Generieke PRO(M)s. 2022. https://www.platformuitkomstgerichtezorg.nl/aan+de+slag/documenten/ HandlerDownloadFiles.ashx?idnv=2148205 15. Mannucci PM. Hemophilia treatment innovation: 50 years of progress and more to come. J Thromb Haemost. 2023;21(3):403-412. doi:10.1016/j.jtha.2022.12.029

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