ArticleResearch and practice in thrombosis and haemostasis2020
Congenital platelet disorders and health status-related quality of life.
Article in Research and practice in thrombosis and haemostasis, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
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Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it, 14 citations in OpenAlex.
- Patient-reported outcomes in autosomal inherited bleeding disorders: A systematic literature review.Haemophilia : the official journal of the World Federation of Hemophilia · 2022Pooled it
- A multicenter prospective observational cohort study to improve diagnostic yield and clinical management of persons with a Bleeding Disorder of Unknown Cause (BDUC-iN study protocol).Research and practice in thrombosis and haemostasis · 2026Observational
- Natural history & quality of life in Glanzmann thrombasthenia & Bernard Soulier syndrome: An observational study from India.The Indian journal of medical research · 2025Observational
- Health-related quality of life in rare bleeding disorders: results from the Rare Bleeding Disorders in the Netherlands study.Research and practice in thrombosis and haemostasis · 2025Article
- One day at a time: Life with Glanzmann thrombasthenia - Qualitative results from the GT 360 study.Haemophilia : the official journal of the World Federation of Hemophilia · 2024Article
- Psychometrics of patient-reported outcomes measurement information system in von Willebrand disease, inherited platelet function disorders, and rare bleeding disorders.Research and practice in thrombosis and haemostasis · 2024Article
- Health-related quality of life is impaired in bleeding disorders of unknown cause: results from the Vienna Bleeding Biobank.Research and practice in thrombosis and haemostasis · 2023Article
- The lived experience of women with a bleeding disorder: A systematic review.Research and practice in thrombosis and haemostasis · 2022Review
- Prevalence, burden and treatment effects of vaginal bleeding in women with (suspected) congenital platelet disorders throughout life: a cross-sectional study.British journal of haematology · 2022Article
- Major differences in clinical presentation, diagnosis and management of men and women with autosomal inherited bleeding disorders.EClinicalMedicine · 2021Article
- Congenital platelet disorders and health status-related quality of life.Research and practice in thrombosis and haemostasis · 2020Article
Corrections and comments
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Authors and funding
10 authors at 6 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatients with congenital blood platelet disorders (CPDs) demonstrate a predominantly mucocutaneous bleeding tendency. Repeated bleeds throughout life can have a significant impact on health status-related quality of life (HR-QoL), but few studies have investigated HR-QoL in patients with CPDs.
objectivesTo determine HR-QoL in patients with suspected or confirmed CPDs as compared with the general Dutch population and to assess the association between bleeding phenotype and HR-QoL.
methodsData were derived from the Thrombocytopathy in the Netherlands (TiN) study, a cross-sectional study of individuals suspected for a congenital platelet defect. TiN patients with an increased ISTH Bleeding Assessment Tool (ISTH-BAT) score (>3 in men and > 5 in women) were included for analysis. HR-QoL was assessed with the Short Form (SF)-36 survey. Bleeding symptoms were evaluated with the ISTH-BAT, resulting in a bleeding score.
resultsOne hundred fifty-six patients were analyzed, of whom 126 (81%) were women. Sixty-two patients (40%) had a confirmed CPD. Compared to the general Dutch population, patients with a suspected or confirmed CPD reported decreased physical functioning, limitations in daily activities due to physical health problems, limitations in social activities, decreased energy levels and fatigue, pain, and lower general health status. HR-QoL was not correlated with the ISTH-BAT score and was similar in patients with a confirmed CPD and those in whom a CPD could not be diagnosed.
conclusionA bleeding tendency in patients with a suspected or confirmed CPD significantly impacts HR-QoL, independent of a confirmed explanatory diagnosis.
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