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    Antiphospholipid (Hughes) syndrome: description of population and health-related quality of life (HRQoL) using the SF-36

    Georgopoulou, S. and Efraimidou, S. and MacLennan, S. and Ibrahim, F. and Cox, Tom (2014) Antiphospholipid (Hughes) syndrome: description of population and health-related quality of life (HRQoL) using the SF-36. Lupus 24 (2), pp. 174-1794. ISSN 0961-2033.

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    Objective Antiphospholipid (Hughes) syndrome (APS) affects mainly women 15 to 50 years of age and is responsible for approximately 20% of strokes in people <40 years. Little is known about the psychological burden of this long-term condition. We investigated HRQoL in APS. Methods We conducted a cross-sectional survey involving 270 members of the Hughes Syndrome Foundation worldwide. Data included HRQoL (SF-36), demographics, and APS-related self-reported major issues. Response rate was 60%. Results T-tests indicated significantly worse mean scores for seven of the eight domains of the SF-36 in secondary antiphospholipid syndrome (SAPS) compared to primary antiphospholipid syndrome (PAPS), e.g. bodily pain t(263) = 6.10 p < 0.001 except for mental health t(267) = 1.95 p = 0.053. PAPS appeared to be associated with poorer HRQoL in most mental health domains but overall better physical domains compared to systemic lupus erythematosus (SLE) alone. SAPS appeared to have a more adverse impact on HRQoL compared to PAPS and SLE. Major issues identified: pain and fatigue, lack of health care professional/public awareness, and medication unpredictability. Conclusion HRQoL in PAPS appears to be generally better than SLE and SAPS in physical domains, but poorer in mental domains. APS patients might need more social support in terms of information and awareness of the condition to improve their coping strategies.


    Item Type: Article
    Keyword(s) / Subject(s): Antiphospholipid (Hughes) syndrome (APS), health-related quality of life (HRQoL), short-form health survey (SF-36), demographics
    School: Birkbeck Faculties and Schools > Faculty of Business and Law > Birkbeck Business School
    Depositing User: Administrator
    Date Deposited: 22 Sep 2014 10:58
    Last Modified: 02 Aug 2023 17:12


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