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

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.

Keywords

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

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References

Hughes

GRV

. Hughes syndrome: A patient’s guide, London: Springer-Verlag, 2001.

Hughes

GRV

. Migraine, memory loss, and “multiple sclerosis”. Neurological features of the antiphospholipid (Hughes’) syndrome. Postgrad Med J 2003; 79: 81–83.

Cervera

Piette

Font

. Antiphospholipid syndrome: Clinical and immunologic manifestations and patterns of disease expression in a cohort of 1,000 patients. Arthritis Rheum 2002; 46: 1019–1027.

Strand V, Khanna D. The impact of rheumatoid arthritis and treatment on patients’ lives. Clin Exp Rheumatol 2009; 28 (3 Suppl 59): S32–S40.

Campos

Vázquez Rodríguez

. Health-related quality of life in women with fibromyalgia: Clinical and psychological factors associated. Clin Rheumatol 2012; 31: 347–355.

García-Carrasco

Mendoza-Pinto

Cardiel

. Health related quality of life in Mexican women with systemic lupus erythematosus: A descriptive study using SF-36 and LupusQoL^©. Lupus 2012; 21: 1219–1224.

Guyatt

Feeny

Patrick

. Measuring health-related quality of life. Ann Intern Med 1993; 118: 622–629.

Wilson

Gharavi

Koike

. International consensus statement on preliminary classification criteria for definite antiphospholipid syndrome. Arthritis Rheum 1999; 42: 1309–1311.

Miyakis

Lockshin

Atsumi

. International consensus statement on an update of the classification criteria for definite antiphospholipid syndrome (APS). J Thromb Haemost 2006; 4: 295–306.

10.

Balitsky

Peeva

. Thrombovascular events affect quality of life in patients with systemic lupus erythematosus. J Rheumatol 2011; 38: 1017–1019.

11.

Kahn

Hirsch

Shrier

. Effect of postthrombotic syndrome on health-related quality of life after deep venous thrombosis. Arch Intern Med 2002; 162: 1144–1148.

12.

Kahn

Shbaklo

Lamping

. Determinants of health-related quality of life during the 2 years following deep vein thrombosis. J Thromb Haemost 2008; 6: 1105–1112.

13.

Kahn

Elman

Bornais

. Post-thrombotic syndrome, functional disability and quality of life after upper extremity deep venous thrombosis in adults. J Thromb Haemost 2005; 93: 499–502.

14.

Brazier

Jones

Kind

. Testing the validity of the Euroqol and comparing it with the SF-36 health survey questionnaire. Qual Life Res 1993; 2: 169–180.

15.

Hutchinson

Rasekaba

Graco

Berlowitz

Hawthorne

Lim

. Relationship between health-related quality of life, and acute care re-admissions and survival in older adults with chronic illness. Health Qual Life Outcomes 2013; 11: 136–136.

16.

Farag

Keithi-Reddy

Mittal

. Anemia, inflammation and health-related quality of life in chronic kidney disease patients. Clin Nephrol 2011; 75: 524–533.

17.

Danieli

Airò

Bettoni

. Health-related quality of life measured by the Short Form 36 (SF-36) in systemic sclerosis: Correlations with indexes of disease activity and severity, disability, and depressive symptoms. Clin Rheumatol 2005; 24: 48–54.

18.

Rinaldi

Doria

Salaffi

. Health-related quality of life in Italian patients with systemic lupus erythematosus. I. Relationship between physical and mental dimension and impact of age. Rheumatology (Oxford) 2004; 43: 1574–1579.

19.

Dobkin

Da Costa

Dritsa

. Quality of life in systemic lupus erythematosus patients during more and less active disease states: differential contributors to mental and physical health. Arthritis Care Res 1999; 12: 401–410.

20.

McHorney

Ware

JE Jr

Raczek

. 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: 247–263.

21.

Bowling

Bond

Jenksinson

Lamping

. Short Form 36 (SF-36) Health Survey questionnaire: Which normative data should be used? Comparisons between the norms provided by the Omnibus Survey in Britain, the Health Survey for England and the Oxford Healthy Life Survey. J Public Health Med 1999; 21: 255–270.

22.

SF-36.org. U.S. population norms, http://www.sf-36.org/research/sf98norms.pdf (1998, accessed 3 August 2014).

23.

Ware

JE Jr

. SF-36 health survey update. Spine 2000; 25: 3130–3139.

24.

Picavet

Hoeymans

. Health related quality of life in multiple musculoskeletal diseases: SF-36 and EQ-5D in the DMC3 study. Ann Rheum Dis 2004; 63: 723–729.

25.

Cassileth

Lusk

Strouse

. Psychosocial status in chronic illness: A comparative analysis of six diagnostic groups. N Engl J Med 1984; 311: 506–511.

26.

Singer

Hopman

MacKenzie

. Physical functioning and mental health in patients with chronic medical conditions. Qual Life Res 1999; 8: 687–691.

27.

Malterud

. Symptoms as a source of medical knowledge: Understanding medically unexplained disorders in women. Fam Med 2000; 32: 603–611.

28.

Natvig

Nessiøy

Bruusgaard

Rutle

. Musculoskeletal symptoms in a local community. Eur J Gen Pr 1995; 1: 25–28.

29.

Werner

Malterud

. It is hard work behaving as a credible patient: Encounters between women with chronic pain and their doctors. Soc Sci Med 2003; 57: 1409–1419.

30.

Mishel

. Perceived uncertainty and stress in illness. Res Nurs Health 1984; 7: 163–171.

31.

Koenig

George

Stangl

Tweed

. Hospital stressors experienced by elderly medical inpatients: Developing a Hospital Stress Index. Int J Psychiatry Med 1995; 25: 103–122.