Abstract
Purpose of Review
Antiphospholipid syndrome (APS) is a chronic autoimmune disease that can be seen as a burden, with consequences on patients’ daily life. Health has traditionally been measured using measures of morbidity or mortality. Health-related quality of life (HRQoL) is a concept that includes quality of life through physical, mental, and social domains. As in other autoimmune diseases, HRQoL has been investigated in patients with APS. Here, we provide a comprehensive review of the current knowledge of the assessment of HRQoL in APS.
Recent Findings
APS patients have an impaired HRQoL compared with the general population. The presence of systemic lupus erythematosus (SLE) in APS patients is associated with a worse HRQoL than in patients without SLE. Several determinants of HRQoL impairment in APS have been identified: age, gender, history of arterial thrombosis, organ damage, lack of social support and treatments.
Summary
This review highlights the negative impact of thrombosis on APS patients’ HRQoL that should not be neglected. Besides, there is a need for a better strategy of communication and information, in order to improve HRQoL in APS.
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References
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Miyakis S, Lockshin MD, Atsumi T, Branch DW, Brey RL, Cervera R, et al. International consensus statement on an update of the classification criteria for definite antiphospholipid syndrome (APS). J Thromb Haemost JTH. 2006;4(2):295–306.
Asherson RA, Khamashta MA, Ordi-Ros J, Derksen RH, Machin SJ, Barquinero J, et al. The ‘primary’ antiphospholipid syndrome: major clinical and serological features. Medicine (Baltimore). 1989;68(6):366–74.
World Health Organization. WHOQOL user manual. Geneva; 1998.
Engel GL. The clinical application of the biopsychosocial model. Am J Psychiatry. 1980;137(5):535–44.
Gladman DD, Urowitz MB, Ong A, Gough J, MacKinnon A. Lack of correlation among the 3 outcomes describing SLE: disease activity, damage and quality of life. Clin Exp Rheumatol. 1996;14(3):305–8.
Gladman DD, Urowitz MB, Ong A, Gough J, MacKinnon A. A comparison of five health status instruments in patients with systemic lupus erythematosus (SLE). Lupus. 1996;5(3):190–5.
Dua AB, Touma Z, Toloza S, Jolly M. Top 10 recent developments in health-related quality of life in patients with systemic lupus erythematosus. Curr Rheumatol Rep. 2013;15(12):380.
Erkan D. Antiphospholipid syndrome: current research highlights and clinical insights. Springer Science+Business Media: New York; 2017.
Ware JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473–83.
EuroQol Group. EuroQol--a new facility for the measurement of health-related quality of life. Health Policy Amst Neth. 1990;16(3):199–208.
Ware JE Jr, Kosinski M, Keller SD. SF36 physical and mental health summary scales: a user’s manual. Boston: The health institute, New England Medical Center; 1994.
da Rocha Castelar Pinheiro G, Khandker RK, Sato R, Rose A, Piercy J. Impact of rheumatoid arthritis on quality of life, work productivity and resource utilisation: an observational, cross-sectional study in Brazil. Clin Exp Rheumatol. 2013;31(3):334–40.
Matcham F, Scott IC, Rayner L, Hotopf M, Kingsley GH, Norton S, et al. The impact of rheumatoid arthritis on quality-of-life assessed using the SF-36: a systematic review and meta-analysis. Semin Arthritis Rheum. 2014;44(2):123–30.
Balitsky AK, Peeva V, Su J, Aghdassi E, Yeo E, Gladman DD, et al. Thrombovascular events affect quality of life in patients with systemic lupus erythematosus. J Rheumatol. 2011;38(6):1017–9.
•• Zuily S, Rat A-C, Regnault V, Kaminsky P, Mismetti P, Ninet J, et al. Impairment of quality of life in patients with antiphospholipid syndrome. Lupus. 2015;24(11):1161–8 This study determined for the first time that a history of arterial thrombosis was associated with a significant negative impact on APS patients’ HRQoL.
•• 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. Lupus. 2015;24(2):174–9 Self-reported major APS-related issues impacting illness management and daily living were newly assessed in this article.
•• Hernández-Molina G, González-Pérez I, Pacheco-Molina C, Cabral AR. Quality of life in patients with antiphospholipid syndrome is related to disease burden and anticoagulant therapy. Int J Rheum Dis. 2017;20(6):755–9 The negative impact of anticoagulant therapy on HRQoL in PAPS was studied for the first time. This article also assessed the negative impact of peripheral vascular domain’s diseases on PAPS patients’ HRQoL.
McElhone K, Abbott J, Shelmerdine J, Bruce IN, Ahmad Y, Gordon C, et al. Development and validation of a disease-specific health-related quality of life measure, the LupusQol, for adults with systemic lupus erythematosus. Arthritis Rheum. 2007 Aug 15;57(6):972–9.
•• Georgopoulou S, Efraimidou S, MacLennan SJ, Ibrahim F, Cox T. The relationship between social support and health-related quality of life in patients with antiphospholipid (Hughes) syndrome. Mod Rheumatol. 2018;28(1):147–55 This study assessed the impact of social support on HRQoL in APS, enlightening the lack of informational social support perceived by APS patients. A better strategy of communication and information could thus lead to a HRQoL’s improvement.
Costa S, Lage L, da Mota LH, de Carvalho J. Fibromyalgia in primary antiphospholipid (Hughes) syndrome. Lupus. 2011;20(11):1182–6.
Amigo M-C, Goycochea-Robles MV, Espinosa-Cuervo G, Medina G, Barragán-Garfias JA, Vargas A, et al. Development and initial validation of a damage index (DIAPS) in patients with thrombotic antiphospholipid syndrome (APS). Lupus. 2015;24(9):927–34.
Cohen H, Hunt BJ, Efthymiou M, Arachchillage DRJ, Mackie IJ, Clawson S, et al. Rivaroxaban versus warfarin to treat patients with thrombotic antiphospholipid syndrome, with or without systemic lupus erythematosus (RAPS): a randomised, controlled, open-label, phase 2/3, non-inferiority trial. Lancet Haematol. 2016;3(9):e426–36.
McHorney CA, Ware JE, Raczek AE. The MOS 36-item short-form health survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care. 1993;31(3):247–63.
Khanna S, Pal H, Pandey RM, Handa R. The relationship between disease activity and quality of life in systemic lupus erythematosus. Rheumatol Oxf Engl. 2004;43(12):1536–40.
Sanchez ML, McGwin G, Durán S, Fernández M, Reveille JD, Vilá LM, et al. Factors predictive of overall health over the course of the disease in patients with systemic lupus erythematosus from the LUMINA cohort (LXII): use of the SF-6D. Clin Exp Rheumatol. 2009;27(1):67–71.
Mollon L, Bhattacharjee S. Health related quality of life among myocardial infarction survivors in the United States: a propensity score matched analysis. Health Qual Life Outcomes. 2017;15(1):235.
Abubakar SA, Isezuo SA. Health related quality of life of stroke survivors: experience of a stroke unit. Int J Biomed Sci IJBS. 2012;8(3):183–7.
Tavoly M, Utne KK, Jelsness-Jørgensen L-P, Wik HS, Klok FA, Sandset PM, et al. Health-related quality of life after pulmonary embolism: a cross-sectional study. BMJ Open. 2016;6(11):e013086.
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Desnoyers, M., Dufrost, V., Wahl, D. et al. Health-Related Quality of Life in Antiphospholipid Syndrome: Current Knowledge and Future Perspectives. Curr Rheumatol Rep 22, 20 (2020). https://doi.org/10.1007/s11926-020-00900-z
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DOI: https://doi.org/10.1007/s11926-020-00900-z