Antiphospholipid (Hughes) syndrome

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

S Georgopoulou, S Efraimidou, SJ MacLennan, F Ibrahim, T Cox

Research output: Contribution to journalArticle

10 Citations (Scopus)

Abstract

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.

Original languageEnglish
Pages (from-to)174-179
Number of pages6
JournalLupus
Volume24
Issue number2
Early online date19 Sep 2014
DOIs
Publication statusPublished - 1 Feb 2015

Fingerprint

Antiphospholipid Syndrome
Quality of Life
Population
Systemic Lupus Erythematosus
Mental Health
Pain
Social Support
Fatigue
Cross-Sectional Studies
Stroke
Demography
Psychology
Delivery of Health Care

Keywords

  • Antiphospholipid (Hughes) syndrome (APS)
  • health-related quality of life (HRQoL)
  • short-form health survey (SF-36)
  • demographics

Cite this

Antiphospholipid (Hughes) syndrome : description of population and health-related quality of life (HRQoL) using the SF-36. / Georgopoulou, S; Efraimidou, S; MacLennan, SJ; Ibrahim, F; Cox, T.

In: Lupus, Vol. 24, No. 2, 01.02.2015, p. 174-179.

Research output: Contribution to journalArticle

Georgopoulou, S ; Efraimidou, S ; MacLennan, SJ ; Ibrahim, F ; Cox, T. / Antiphospholipid (Hughes) syndrome : description of population and health-related quality of life (HRQoL) using the SF-36. In: Lupus. 2015 ; Vol. 24, No. 2. pp. 174-179.
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abstract = "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.",
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note = "{\circledC} The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav. Funding This work was part of a Masters project fulfilling degree requirements at the University of Nottingham. The study was only supported through academic supervision by the institution faculty. No financial support was provided by the University for this project. Acknowledgements We are grateful to Ms Kate Hindle, manager of the Hughes Syndrome Foundation, for her invaluable help and support in conducting the study, to Ms Ann Sumra, coordinator of the Hughes Syndrome London support group, and to all its members for their comments and helpful suggestions. We would also like to acknowledge the significant contribution of all Hughes Syndrome Foundation members who participated in the present study. Last but not least, we would like to express our gratitude to Professor Graham Hughes for his encouragement, support and passion which inspired this research and motivated us throughout the whole project. The views expressed here are the authors’ and do not necessarily reflect those of any other person or organization.",
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N1 - © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav. Funding This work was part of a Masters project fulfilling degree requirements at the University of Nottingham. The study was only supported through academic supervision by the institution faculty. No financial support was provided by the University for this project. Acknowledgements We are grateful to Ms Kate Hindle, manager of the Hughes Syndrome Foundation, for her invaluable help and support in conducting the study, to Ms Ann Sumra, coordinator of the Hughes Syndrome London support group, and to all its members for their comments and helpful suggestions. We would also like to acknowledge the significant contribution of all Hughes Syndrome Foundation members who participated in the present study. Last but not least, we would like to express our gratitude to Professor Graham Hughes for his encouragement, support and passion which inspired this research and motivated us throughout the whole project. The views expressed here are the authors’ and do not necessarily reflect those of any other person or organization.

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N2 - 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.

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