ReviewHematology. American Society of Hematology. Education Program2022
What have we learned about the patient's experience of von Willebrand disease? A focus on women.
Review in Hematology. American Society of Hematology. Education Program, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Past, Present, and Future of von Willebrand Disease.Advances in therapy · 2026Pooled it
- Beyond a century of discovery: the global and persistent burden of underdiagnosis in von Willebrand disease.Research and practice in thrombosis and haemostasis · 2026Review
- Health-related quality of life in adults with von Willebrand disease: results of the French real-life Willebrand study on health-related quality of life.Research and practice in thrombosis and haemostasis · 2026Article
- Von Willebrand disease: more than just a bleeding disorder.Research and practice in thrombosis and haemostasis · 2026Review
- Evaluation of coagulation disorders and iron deficiency in women with heavy menstrual bleeding.International journal of gynaecology and obstetrics: the official organ of the International Federation of Gynaecology and Obstetrics · 2026Article
- Multidisciplinary perinatal care for women with bleeding disorders.Research and practice in thrombosis and haemostasis · 2025Article
- Building access to care for Women and GirlsResearch and practice in thrombosis and haemostasis · 2025Article
- An approach to Hemequity: Identifying the barriers and facilitators of iron deficiency reduction strategies in low- to middle-income countries.British journal of haematology · 2025Article
- The detrimental impact of ferritin "normal" ranges on diagnosis of bleeding disorders in women.Research and practice in thrombosis and haemostasis · 2025Article
- The American Society of Hematology Health Equity Compendium: examining health equity across the Blood journals.Blood advances · 2024Article
- Tranexamic acid for management of heavy vaginal bleeding: barriers to access and myths surrounding its use.Research and practice in thrombosis and haemostasis · 2024Article
- Pharmacologically Treated Anxiety and Depression in People Diagnosed with von Willebrand Disease: Matched Cohort Study.Journal of blood medicine · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Von Willebrand disease (VWD), the most common inherited bleeding disorder (IBD), disproportionately affects females, given the hemostatic challenges they may encounter throughout their lifetimes. Despite this, research about VWD remains grossly underrepresented, particularly compared to hemophilia, which is historically diagnosed in males. Structural sexism, stigmatization of menstrual bleeding, delayed diagnosis, and a lack of timely access to care result in an increased frequency of bleeding events, iron deficiency, iron deficiency anemia, and a decreased quality of life. However, we are only beginning to recognize and acknowledge the magnitude of the burden of this disease. With an increasing number of studies documenting the experiences of women with IBDs and recent international guidelines suggesting changes to optimal management, a paradigm shift in recognition and treatment is taking place. Here, we present a fictional patient case to illustrate one woman's history of bleeding. We review the evidence describing the impact of VWD on quality of life, normalization of vaginal bleeding, diagnostic delays, and the importance of access to multidisciplinary care. Furthermore, we discuss considerations around reproductive decision-making and the intergenerational nature of bleeding, which often renders patients as caregivers. Through incorporating the patient perspective, we argue for an equitable and compassionate path to overcome decades of silence, misrecognition, and dismissal. This path moves toward destigmatization, open dialogue, and timely access to specialized care.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.