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

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 l...

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Bibliographic Details
Published in:Health and quality of life outcomes 2018-05, Vol.16 (1), p.84-84, Article 84
Main Authors: O'Hara, Jamie, Walsh, Shaun, Camp, Charlotte, Mazza, Giuseppe, Carroll, Liz, Hoxer, Christina, Wilkinson, Lars
Format: Article
Language:English
Subjects:
Analysis
Care and treatment
Disease burden
Haemophilia
Health-related quality of life
Hemophilus infections
Joint disease
Outcome and process assessment (Health Care)
Patient-reported outcome measures
Risk factors
Synovitis
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Summary: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). 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. 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 
ISSN:1477-7525
1477-7525
DOI:10.1186/s12955-018-0908-9