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 language | English |
|---|---|
| Pages (from-to) | 174-179 |
| Number of pages | 6 |
| Journal | Lupus |
| Volume | 24 |
| Issue number | 2 |
| Early online date | 19 Sept 2014 |
| DOIs | |
| Publication status | Published - 1 Feb 2015 |
Bibliographical note
© 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.
Keywords
- Antiphospholipid (Hughes) syndrome (APS)
- health-related quality of life (HRQoL)
- short-form health survey (SF-36)
- demographics
