Katharine Dormandy Haemophilia and Thrombosis centre, Department of Obstetrics and Gynaecology, The Royal Free NHS Foundation Trust, Institute for Women's Health, University College London, London, UK.
Madinah Hereditary Blood Disorders Center and Pediatric Hematology Department, King Salman Medical City, Al-Madinah Al-Munawwarah, Saudi Arabia.
Haemophilia. 2024 Sep;30(5):1185-1192. doi: 10.1111/hae.15088. Epub 2024 Aug 20.
A number of barriers in care exist for women/girls with bleeding disorders. Little progress has been made to overcome them, particularly regarding levels of awareness of healthcare professionals (HCPs) and women/girls.
To evaluate awareness and perception of heavy menstrual bleeding (HMB) and bleeding disorders among HCPs and women/girls.
A three-part qualitative study was conducted, including HCPs and women/girls from over seven countries. Part 1 included eleven 60-min interviews with experts discussing HMB diagnostic barriers, which were further assessed in surveys among 6099 women/girls, 353 general practitioners (GPs), and 426 obstetricians and gynaecologists (OB/GYNs) during Part 2. Part 3 included three 1.5-2-h workshops with 20 clinicians and patient representatives covering HMB knowledge, criteria defining HMB and HCP resourcing for diagnosis.
Many HCPs do not conduct certain investigations for women/girls presenting with HMB, and 22% of GPs lack confidence in the management of HMB. Only 8% of GPs use screening tools to evaluate menstrual blood loss, and 13% of GPs and 15% of OB/GYNs assess underlying bleeding disorders. Seventy-six percent of menstruating women/girls believed they could recognise HMB symptoms 'well'. However, 23% of these women/girls would not seek medical advice for abnormal/prolonged menstruation disrupting their lives. Disruptions were reported in 34% of women/girls from the general population and 61% of women with at-risk symptoms of HMB.
Many women/girls and HCPs have limited awareness of important HMB indicators. There is a need for standardized clinical criteria to promote efficient diagnoses and management.
患有出血性疾病的女性/女孩在护理方面存在诸多障碍。尽管在提高医疗保健专业人员（HCP）和女性/女孩的意识方面取得了一些进展，但在克服这些障碍方面几乎没有取得任何进展。
评估 HCP 和女性/女孩对月经过多（HMB）和出血性疾病的认识和看法。
进行了一项三部分的定性研究，包括来自七个以上国家的 HCP 和女性/女孩。第 1 部分包括与专家进行的 11 次 60 分钟访谈，讨论 HMB 诊断障碍，这些障碍在第 2 部分的 6099 名女性/女孩、353 名全科医生（GP）和 426 名妇产科医生（OB/GYN）的调查中进一步进行了评估。第 3 部分包括与 20 名临床医生和患者代表进行的三次 1.5-2 小时研讨会，涵盖 HMB 知识、定义 HMB 的标准以及 HCP 诊断资源。
许多 HCP 对出现 HMB 的女性/女孩不进行某些检查，22%的 GP 对 HMB 的管理缺乏信心。只有 8%的 GP 使用筛查工具来评估月经失血量，而 13%的 GP 和 15%的 OB/GYN 评估潜在的出血性疾病。76%的月经女性/女孩认为她们可以“很好”地识别 HMB 症状。然而，23%的这些女性/女孩在月经异常/延长干扰生活时不会寻求医疗建议。普通人群中有 34%的女性/女孩和有 HMB 高危症状的女性中有 61%报告出现干扰。
许多女性/女孩和 HCP 对重要的 HMB 指标的认识有限。需要有标准化的临床标准来促进有效的诊断和管理。
