Volume 9 (2022): Issue 1

Monitoring to improve quality of life in women with bleeding disorders

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Declan Noone ORCID iD
Roseline d’Oiron ORCID iD

Abstract

Abstract

Systematic structures to understand the incidence and prevalence of bleeding disorders in women and girls are in place in some countries and becoming more robust, though there is still room for improvement. More co-ordinated data gathering is providing new insights into the diagnosis and treatment of girls with bleeding disorders and demonstrating clear deficits in care compared with boys that can have important implications around puberty. Recognition and recording of female symptoms such as heavy menstrual bleeding (HMB) may lag behind that of symptoms with a greater perception bias, such as joint bleeds, and affect quality of life and wellbeing. Addressing inequity of symptom recognition and recording is needed to drive appropriate and timely treatment interventions. New symptom tools can empower patients to differentiate normal from abnormal bleeding so they can seek and receive help. Greater awareness among health care professionals (HCPs) of women's bleeding disorders and the establishment of referral networks for diagnosis and treatment, with multidisciplinary assessment and follow-up, are still needed.

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References

  • 1. World Federation of Hemophilia. Report on the Annual Global Survey 2019. October 2020. Available from https://www1.wfh.org/publications/files/pdf-1806.pdf (accessed 23 August 2022).
  • 2. World Federation of Hemophilia. Report on the Annual Global Survey 2009. March 2011. Available from https://www1.wfh.org/publications/files/pdf-1428.pdf (accessed 23 August 2022).
  • 3. Noone D, Skouw-Rasmussen N, Lavin M, van Galen KPM, Kadir RA. Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium. Haemophilia 2019; 25(3): 468–474. doi: https://doi.org/10.1111/hae.13722.
  • 4. Di Michele DM, Gibb C, Lefkowitz JM, et al. Severe and moderate haemophilia A and B in US females. Haemophilia 2014; 20(2): e136–143. doi: https://doi.org/10.1111/hae.12364.
  • 5. Viprey M, Volot F, Falaise C, et al., on behalf of FranceCoag. Age at diagnosis is delayed in women/girls with haemophilia compared to men/boys: a FranceCoag report. Abstract MED-FP-031 (501). World Federation of Hemophlia Global Virtual Summit June 2020. Haemophilia 2020; 26(S4): 79. doi: https://doi.org/10.1111/hae.13941.
  • 6. Arya S, Wilton P, Page D, et al. “They don’t really take my bleeds seriously”: Barriers to care for women with inherited bleeding disorders. J Thromb Haemost 2021; 19: 1506–1514. doi:https://doi.org/10.1111/jth.15311.
  • 7. Criado Perez C. Invisible Women: Exposing Data Bias in a World Designed for Men. 2019. London: Chatto & Windus.
  • 8. Government of Ireland. Period Poverty in Ireland. Discussion Paper. Period Poverty Sub-Committee, National Strategy for Women and Girls, 2017–2020. February 2021. Available from https://www.gov.ie/en/publication/264f4-period-poverty-in-ireland-discussion-paper-period-poverty-sub-committee-national-strategy-for-women-and-girls-20172020-february-2021/ (accessed 23 August 2022).
  • 9. Citla-Sridhar D, Sidonio RF Jr, Ahuja SP. Bone health in haemophilia carriers and persons with von Willebrand disease: A large database analysis. Haemophilia 2022 Apr 13. doi: https://doi.org/10.1111/hae.14565. Online ahead of print
  • 10. Canadian Hemophilia Society. CBDR – Canadian Bleeding Disorder Registry. MyCBDR. Available from https://www.hemophilia.ca/mycbdr/ (accessed 23 August 2022).
  • 11. Doncarli A, Demiguel V, Guseva Canu I, et al. FranceCoag: a 22-year prospective follow-up of the national French cohort of patients with inherited bleeding disorders. Eur J Epidemiol 2019; 34: 521–532. doi: https://doi.org/10.1007/s10654-018-0468-7.
  • 12. Renault NK, Howell RE, Robinson KS, Greer WL. Qualitative assessment of the emotional and behavioural responses of haemophilia A carriers to negative experiences in their medical care. Haemophilia 2011; 17(2): 237–45. doi: https://doi.org/10.1111/j.1365-2516.2010.02424.x.
  • 13. O’Mahony B. Electronic health records – the patient perspective. Abstract SPK026. Speaker Abstracts – Virtual Congress of the European Association for Haemophilia and Allied Disorders 2021, 3–5 February 2021. Haemophilia 2021; 27(S2): 13. doi: https://doi.org/10.1111/hae.14237.
  • 14. Chai-Adisaksopha C, Noone D, Curtis R, et al. Non-severe haemophilia: Is it benign? – Insights from the PROBE study. Haemophilia 2021; 27 Suppl 1: 17–24. doi: https://doi.org/10.1111/hae.14105.

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