ArticleHaemophilia : the official journal of the World Federation of Hemophilia2017
The effects of joint disease, inhibitors and other complications on health-related quality of life among males with severe haemophilia A in the United States.
Article in Haemophilia : the official journal of the World Federation of Hemophilia, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.
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Who cites it
19 citing papers in PubMed, 41 citations in OpenAlex.
- Assessing the health-state utility values of rare disease-hemophilia B using EQ-5D-5L: a study based on the Chinese population.Orphanet journal of rare diseases · 2025Article
- Mental Health, Work Productivity, and Quality of Life in People with Severe Haemophilia A Receiving Prophylaxis: Findings from the CHESS Data Platform.TH open : companion journal to thrombosis and haemostasis · 2025Article
- Assessment of joint health in patients receiving prophylaxis for haemophilia A: a cross-sectional survey in five European countries.BMJ open · 2024Article
- A Qualitative Study Exploring the Experiences and Perceptions of Patients with Hemophilia Regarding Their Health-Related Well-Being, in Salamanca.Journal of clinical medicine · 2023Article
- Efficacy of emicizumab is maintained throughout dosing intervals for bleed prophylaxis.Research and practice in thrombosis and haemostasis · 2023Article
- Health-related quality of life of patients with haemophilia: a cross-sectional survey in the Northeast of China.BMJ open · 2022Article
- Evaluating the psychometric properties of the EQ-5D-5L and SF-6D among patients with haemophilia.The European journal of health economics : HEPAC : health economics in prevention and care · 2021Article
- Impact of the HEAD-US Scoring System for Observing the Protective Effect of Prophylaxis in Hemophilia Patients: A Prospective, Multicenter, Observational StudyTurkish journal of haematology : official journal of Turkish Society of Haematology · 2021Observational
- Clinical, humanistic, and economic burden of severe hemophilia B in the United States: Results from the CHESS US and CHESS US+ population surveys.Orphanet journal of rare diseases · 2021Article
- Investigating the Added Value of the EQ-5D-5L With Two Bolt-On Items in Patients With Hemophilia.Frontiers in medicine · 2021Article
- Health-related quality of life and caregiver burden of emicizumab in children with haemophilia A and factor VIII inhibitors-Results from the HAVEN 2 study.Haemophilia : the official journal of the World Federation of Hemophilia · 2020Article
- Hemophilia without prophylaxis: Assessment of joint range of motion and factor activity.Research and practice in thrombosis and haemostasis · 2020Article
- Article
- Novel Piperazino-Enaminones Decrease Pro-inflammatory Cytokines Following Hemarthrosis in a Hemophilia Mouse Model.Inflammation · 2019Article
- Timely and large dose of clotting factor IX provides better joint wound healing after hemarthrosis in hemophilia B mice.International journal of hematology · 2019Article
- Health-related quality of life and health status in persons with haemophilia A with inhibitors: A prospective, multicentre, non-interventional study (NIS).Haemophilia : the official journal of the World Federation of Hemophilia · 2019Article
- Professional functioning of young adults with congenital coagulation disorders in the Netherlands.Haemophilia : the official journal of the World Federation of Hemophilia · 2019Article
- Sociodemographic, Clinical, and Psychosocial Characteristics of People with Hemophilia in Portugal: Findings from the First National Survey.TH open : companion journal to thrombosis and haemostasis · 2018Article
- Advances in Hereditary Angioedema: The Prevention of Angioedema Attacks With Subcutaneous C1-Inhibitor Replacement Therapy.Journal of infusion nursing : the official publication of the Infusion Nurses SocietyArticle
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Authors and funding
9 authors at 2 institutions in 1 country.
Funding
Abstract
introductionHealth-related quality of life (HRQoL) is reduced among persons with haemophilia. Little is known about how HRQoL varies with complications of haemophilia such as inhibitors and joint disease. Estimates of preference-based HRQoL measures are needed to model the cost-effectiveness of prevention strategies.
aimWe examined the characteristics of a national sample of persons with severe haemophilia A for associations with two preference-based measures of HRQoL.
methodsWe analysed utility weights converted from EuroQol 5 Dimensions (EQ-5D) and the Short Form 6 Dimensions (SF-6D) scores from 1859 males aged ≥14 years with severe haemophilia A treated at 135 US haemophilia treatment centres in 2005-2011. Bivariate and regression analyses examined age-group-specific associations of HRQoL with inhibitor status, overweight/obesity, number of bleeds, viral infections, indicators of liver and joint disease, and severe bleeding at the time of the first HRQoL measurement.
resultsOverall mean HRQoL utility weight values were 0.71 using the SF-6D and 0.78 using the EQ-5D. All studied patient characteristics except for overweight/obesity were significantly associated with HRQoL in bivariate analyses. In a multivariate analysis, only joint disease was significantly associated with utility weights from both HRQoL measures and across all age groups. After adjustment for joint disease and other variables, the presence of an inhibitor was not significantly associated with HRQoL scores from either of the standardized assessment tools.
conclusionClinically significant complications of haemophilia, especially joint disease, are strongly associated with HRQoL and should be accounted for in studies of preference-based health utilities for people with haemophilia.
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