Objective: Antiphospholipid (Hughes) syndrome (APS) is recognised as a systemic autoimmune disease defined by recurrent thromboembolic events and/or pregnancy morbidity. Little is known about the psychological burden of this long-term condition. This study aims to explore the relationship between social support and health-related quality of life (HRQoL) in patients with APS.
Methods: A total of 270 patients with a clinical diagnosis of APS participated in a cross-sectional online questionnaire survey. Data included demographics, disease-related information, social support and HRQoL.
Results: Both perceived and ideal social support were associated with HRQoL in APS. Patients reported receiving insufficient social support. Perceived emotional support was related to physical functioning (B = 7.77, p = .006, 95% CI: 2.25, 13.29); perceived instrumental support was associated with bodily pain (B = 17.52, p < .001, 95% CI: 11.15, 23.90) and perceived informational support with physical and social functioning (B = −6.30, p = .05, 95% CI: −12.52, −0.08; B = 8.06, p = .02, 95% CI: 1.17, 14.94). Ideal emotional support was related to physical and social functioning (B = 5.80, p = .04, 95% CI: 0.26, 11.34; B = 7.53, p = .04, 95% CI: 0.55, 14.51); ideal instrumental support was associated with mental health (B = 4.73, p = .03, 95% CI: 0.38, 9.07) and ideal informational support with vitality (B = 5.85, p = .01, 95% CI: 1.23, 10.46).
Conclusion: Social support was linked to HRQoL in patients with APS. Insufficient social support was associated with limitations in various HRQoL domains. Increasing social support especially through provision of disease-specific education might contribute to improving HRQoL in patients with APS. Patient-tailored interventions addressing psychosocial aspects of living with APS are needed to improve patients’ psychological and physical status.
Bibliographical noteThis research was supported by the Institute of Work, Health & Organisations of the University of Nottingham. We are grateful to Ms. Kate Hindle, manager of the Hughes Syndrome Foundation, for her invaluable help and support in conducting the study as well as to the Hughes Syndrome London support group for their comments and helpful suggestions. We would also like to acknowledge the significant contribution of all the 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.
- Antiphospholipid (Hughes) syndrome (APS)
- social support
- health-related quality of life (HRQoL)
- short-form health survey (SF-36)