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    The impact of severe haemophilia and the presence of target joints on health-related quality-of-life

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    Authors
    O’Hara, Jamie
    Walsh, Shaun
    Camp, Charlotte
    Mazza, Giuseppe
    Carroll, Liz
    Hoxer, Christina
    Wilkinson, Lars
    Affiliation
    University of Chester; HCD Economics; University College London; The Haemophilia Society; Novo Nordisk
    Publication Date
    2018-05-02
    
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    Abstract
    Background: Joint damage remains a major complication associated with haemophilia and is widely accepted as one of the most debilitating symptoms for persons with severe haemophilia. The aim of this study is to describe how complications of haemophilia such as target joints influence health-related quality of life (HRQOL). Methods: Data on hemophilia patients without inhibitors were drawn from the ‘Cost of Haemophilia across Europe – a Socioeconomic Survey’ (CHESS) study, a cost-of-illness assessment in severe haemophilia A and B across five European countries (France, Germany, Italy, Spain, and the UK). Physicians provided clinical and sociodemographic information for 1285 adult patients, 551 of whom completed corresponding questionnaires, including EQ-5D. A generalised linear model was developed to investigate the relationship between EQ-5D index score and target joint status (defined in the CHESS study as areas of chronic synovitis), adjusted for patient covariates including socio-demographic characteristics and comorbidities. Results: Five hundred and fifteen patients (42% of the sample) provided an EQ-5D response; a total of 692 target joints were recorded across the sample. Mean EQ-5D index score for patients with no target joints was 0.875 (standard deviation [SD] 0.179); for patients with one or more target joints, mean index score was 0.731 (SD 0.285). Compared to having no target joints, having one or more target joints was associated with lower index scores (average marginal effect (AME) -0.120; SD 0.0262; p < 0.000). Conclusions: This study found that the presence of chronic synovitis has a significant negative impact on HRQOL for adults with severe haemophilia. Prevention, early diagnosis and treatment of target joints should be an important consideration for clinicians and patients when managing haemophilia.
    Citation
    O’Hara, J., et el. (2018). The impact of severe haemophilia and the presence of target joints on health-related quality-of-life. Health and Quality of Life Outcomes, 16(1), 84. http://doi.org/10.1186/s12955-018-0908-9
    Publisher
    BioMed Central
    Journal
    Health and Quality of Life Outcomes
    URI
    http://hdl.handle.net/10034/621173
    DOI
    10.1186/s12955-018-0908-9
    Additional Links
    https://hqlo.biomedcentral.com/articles/10.1186/s12955-018-0908-9
    Type
    Article
    Language
    en
    EISSN
    1477-7525
    ae974a485f413a2113503eed53cd6c53
    10.1186/s12955-018-0908-9
    Scopus Count
    Collections
    Health and Social Care
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