139 General discussion and future perspectives REFERENCE LIST 1 Connell NT, James PD, Brignardello-Petersen R, Abdul-Kadir R, Ameer B, Arapshian A, Couper S, Di Paola J, Eikenboom J, Giraud N, Grow JM, Haberichter S, Jacobs-Pratt V, Konkle BA, Kouides P, Laffan M, Lavin M, Leebeek FWG, McLintock C, McRae S, Montgomery R, O’Brien SH, O’Donnell JS, Ozelo MC, Scappe N, Sidonio R, Tosetto A, Weyand AC, Kalot MA, Husainat N, Mustafa RA, Flood VH. von Willebrand disease: proposing definitions for future research. Blood Adv. 2021; 5: 565-9. 10.1182/ bloodadvances.2020003620. 2 Higham JM, O’Brien PM, Shaw RW. Assessment of menstrual blood loss using a pictorial chart. Br J Obstet Gynaecol. 1990; 97: 734-9. 10.1111/ j.1471-0528.1990.tb16249.x. 3 Rodeghiero F, Tosetto A, Abshire T, Arnold DM, Coller B, James P, Neunert C, Lillicrap D, VWF ISj, Perinatal/Pediatric Hemostasis Subcommittees Working G. ISTH/SSC bleeding assessment tool: a standardized questionnaire and a proposal for a new bleeding score for inherited bleeding disorders. J Thromb Haemost. 2010; 8: 2063-5. 10.1111/j.15387836.2010.03975.x. 4 Committee on Practice B-G. Practice bulletin no. 128: diagnosis of abnormal uterine bleeding in reproductive-aged women. Obstet Gynecol. 2012; 120: 197-206. 10.1097/AOG.0b013e318262e320. 5 Heavy menstrual bleeding: assessment and management. London, 2021. 6 Fraser IS, Critchley HO, Broder M, Munro MG. The FIGO recommendations on terminologies and definitions for normal and abnormal uterine bleeding. Semin Reprod Med. 2011; 29: 383-90. 10.1055/s0031-1287662. 7 Maas D, Saes JL, Blijlevens NMA, Cnossen MH, den Exter PL, van der Heijden OWH, Kruis IC, Meijer K, Peters M, Schutgens REG, van Heerde WL, Nieuwenhuizen L, Schols SEM, group RBs. High prevalence of heavy menstrual bleeding in women with rare bleeding disorders in the Netherlands: retrospective data from the RBiN study. J Thromb Haemost. 2023; 21: 2726-34. 10.1016/j.jtha.2023.07.014. 8 Brown MC, Tickle K, Woods K, Sidonio RF. Adequate menstrual suppression in adolescents with inherited bleeding disorders often requires multiple treatment changes: Retrospective cohort study of a multidisciplinary clinic. Pediatr Blood Cancer. 2024; 71: e30944. 10.1002/pbc.30944. 9 Byams VR, Kouides PA, Kulkarni R, Baker JR, Brown DL, Gill JC, Grant AM, James AH, Konkle BA, Maahs J, Dumas MM, McAlister S, Nance D, Nugent D, Philipp CS, Soucie JM, Stang E, Haemophilia Treatment Centres Network I. Surveillance of female patients with inherited bleeding disorders in United States Haemophilia Treatment Centres. Haemophilia. 2011; 17 Suppl 1: 6-13. 10.1111/j.13652516.2011.02558.x. 10 Cooper NAM, Yorke S, Tan A, Khan KS, Rivas C. Qualitative study exploring which research outcomes best reflect women’s experiences of heavy menstrual bleeding: stakeholder involvement in development of a core outcome set. BMJ Open. 2023; 13: e063637. 10.1136/bmjopen-2022-063637. 11 Weyand AC, James PD. Sexism in the management of bleeding disorders. Res Pract Thromb Haemost. 2021; 5: 51-4. 10.1002/rth2.12468. 12 Johnston-Robledo I, Chrisler JC. The Menstrual Mark: Menstruation as Social Stigma. In: Bobel C, Winkler IT, Fahs B, Hasson KA, Kissling EA, Roberts TA, eds. The Palgrave Handbook of Critical Menstruation Studies. Singapore, 2020, 181-99. 13 van Galen K, Lavin M, Skouw-Rasmussen N, Fischer K, Noone D, Pollard D, Mauser-Bunschoten E, Khair K, Gomez K, van Loon E, Bagot CN, Elfvinge P, d’Oiron R, Abdul-Kadir R, European Haemophilia C, the European Association for H, Allied D. European principles of care for women and girls with inherited bleeding disorders. Haemophilia. 2021; 27: 837-47. 10.1111/hae.14379. 14 Appelbaum H, Acharya SS. Heavy menstrual bleeding in adolescents: hormonal or hematologic? Minerva Ginecol. 2011; 63: 547-61. 15 Moenen F, Nelemans PJ, Schols SEM, Schouten HC, Henskens YMC, Beckers EAM. The diagnostic accuracy of bleeding assessment tools for the identification of patients with mild bleeding disorders: A systematic review. Haemophilia. 2018; 24: 525-35. 10.1111/hae.13486. 16 Rashid A, Moiz B, Karim F, Shaikh MS, Mansoori H, Raheem A. Use of ISTH bleeding assessment tool to predict inherited platelet dysfunction in resource constrained settings. Scand J Clin Lab Invest. 2016; 76: 373-8. 10.1080/00365513.2016.1183260. 17 Deforest M, Grabell J, Albert S, Young J, Tuttle A, Hopman WM, James PD. Generation and optimization of the self-administered bleeding assessment tool and its validation as a screening test for von Willebrand disease. Haemophilia. 2015; 21: e384-8. 10.1111/hae.12747. 8
RkJQdWJsaXNoZXIy MTk4NDMw