ReviewResearch and practice in thrombosis and haemostasis2022
The lived experience of women with a bleeding disorder: A systematic review.
Review in Research and practice in thrombosis and haemostasis, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers.
What it found
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Who cites it
22 citing papers in PubMed.
- Perioperative Patient Blood Management: Evidence-Based Strategies for Surgeons and Anesthesiologists: A Narrative Review.Journal of clinical medicine · 2026Review
- A persistent diagnostic gap: awareness and workup of bleeding disorders in heavy menstrual bleeding among Dutch gynecologists and hematologists.BMC women's health · 2026Article
- Hemophilia's Overlooked Female Face.Journal of clinical medicine · 2026Review
- Prophylaxis for von Willebrand disease: Is it time for parity with established practice in hemophilia A?Therapeutic advances in hematology · 2026Review
- Von Willebrand disease: more than just a bleeding disorder.Research and practice in thrombosis and haemostasis · 2026Review
- Prevalence and Impact of Heavy Menstrual Bleeding in Women With von Willebrand Disease Across Age Groups: A Retrospective Study.Haemophilia : the official journal of the World Federation of Hemophilia · 2025Article
- Multidisciplinary perinatal care for women with bleeding disorders.Research and practice in thrombosis and haemostasis · 2025Article
- The association between various menstrual disorders and well-being was mediated by anxiety: a cross-sectional study.BMC women's health · 2025Article
- Narrative medicine intervention on the obstetric-gynaecological work floor to discuss social stigmas around heavy menstrual bleeding using cocreated site-specific poetry.Medical humanities · 2025Article
- How Women Discuss Heavy Menstrual Bleeding in Online Forums ("It's Like Revenge of the Uterus"): Template Approach to Thematic Analysis.Journal of medical Internet research · 2025Article
- Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence.Orphanet journal of rare diseases · 2025Article
- The detrimental impact of ferritin "normal" ranges on diagnosis of bleeding disorders in women.Research and practice in thrombosis and haemostasis · 2025Article
- Article
- Proactive systematic hemophilia carrier screening: a step toward gender equity in hemophilia care.Blood advances · 2024Observational
- Gender equity in hemophilia: need for healthcare, familial, and societal advocacy.Frontiers in medicine · 2024Review
- New and emerging therapies for women, girls, and people with the potential to menstruate with VWD.Blood advances · 2023Article
- What have we learned about the patient's experience of von Willebrand disease? A focus on women.Hematology. American Society of Hematology. Education Program · 2022Review
- The lived experience of women with a bleeding disorder: A systematic review.Research and practice in thrombosis and haemostasis · 2022Review
- Health-Related Quality of Life Among Female Carriers of Haemophilia and Non-Carriers in a Colombian Population.Haemophilia : the official journal of the World Federation of HemophiliaArticle
- Preoperative diagnosis and management of inherited bleeding disorders in female adolescents and adults.Canadian journal of surgery. Journal canadien de chirurgieReview
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundResearch studies have described the morbidity associated with inherited bleeding disorders such as hemophilia and von Willebrand disease in women, but their effect on daily living has long been underrecognized. This systematic review sought to document the lived experience of women with a bleeding disorder by assessing research findings on quality of health care, socioeconomic factors, and mental health.
methodsA systematic search was carried out in Web of Science, the Cumulative Index to Nursing and Allied Health Literature, and PubMed on July 31, 2020. References were hand searched. Abstracts of the 2019 and 2020 congresses on bleeding disorders were hand searched. Key journals were screened for relevant studies published after the search date until the analysis was completed on December 7, 2020.
resultsOf 635 potentially eligible publications, 27 published since 1998 were selected for review. Most studies were of moderate to high quality but meta-analysis of quantitative studies was not possible due to difference in outcomes and assessment.Women with a bleeding disorder experience obstacles to accessing care, difficulties living with their disorder, interference with schooling and work, and poor mental health. Diagnostic delay and lack of recognition of symptoms mean treatment and support may not be available. Where comparisons with controls were made, women's negative experiences were greater than those of men.
conclusionsWomen with bleeding disorders experience major negative impacts of their disorders on daily life and mental well-being. Many of the challenges identified in earlier research are evident in more recent studies.
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