Clinical Rheumatology

, Volume 28, Issue 9, pp 1091–1100 | Cite as

Patients’ experiences of a diagnosis of Hughes’ syndrome

Brief Report

Abstract

The objectives of the study were to describe the experience of patients immediately prior to a diagnosis of Hughes syndrome (HS) or antiphospholipid syndrome and post-diagnosis. A questionnaire survey was carried out set in the Hughes Syndrome Foundation, St. Thomas’ Hospital, London, 2006. Participants were all patients who are members of the Hughes Syndrome Foundation. The main outcome measures were responses to a questionnaire relating to the experiences of people with a diagnosis of HS, such as number of hospitalisations, number of consultants seen, number of miscarriages, etc. A total of 157 patients completed the questionnaire, giving a response rate of 60.4%. Most (85%) were women and mean age was 46 years (SD 12). The median time to diagnosis was 3 years. The median number of consultants seen was 2 (max 19) with a median time in hospital pre-diagnosis of 10 days. The most common initial diagnoses were migraines, multiple sclerosis and systemic lupus erythematosus. Among women, 46% had had a miscarriage. Two thirds of respondents thought a blood test would have led to an earlier diagnosis. Comments from patients indicated a lack of awareness among specialists and general practitioners. The survey demonstrated a long time lag for diagnosis of Hughes syndrome, with increased costs to the NHS and emotional and financial cost to the patient. Greater awareness of this condition would benefit patients and the NHS.

Keywords

Antiphospholipid syndrome Hughes syndrome 

References

  1. 1.
    Hughes GRV (1983) Thrombosis, abortion, cerebral disease, and the lupus anticoagulant. BMJ 287:1088–1089PubMedCrossRefGoogle Scholar
  2. 2.
    Hughes G (2007) Hughes syndrome. Clin Rev Allergy Immunol 32:3–11PubMedCrossRefGoogle Scholar
  3. 3.
    Ferreira S, D’Cruz DP, Hughes GRV (2005) Multiple sclerosis, neuropsychiatric lupus and antiphospholipid syndrome: where do we stand? Rheumatology 44:434–442PubMedCrossRefGoogle Scholar
  4. 4.
    Jara LJ, Medina G, Vera-Lastra O (2007) Systemic antiphospholipid syndrome and atherosclerosis. Clin Rev Allergy Immunol 32:172–177PubMedCrossRefGoogle Scholar
  5. 5.
    Amigo MC (2007) The heart and APS. Clin Rev Allergy Immunol 32:178–183PubMedCrossRefGoogle Scholar
  6. 6.
    Sestal AL, O’Neil KM (2007) Familial lupus and antiphospholipid syndrome. Lupus 16:556–563CrossRefGoogle Scholar
  7. 7.
    Hughes GRV (2008) Hughes syndrome (the antiphospholipid syndrome). Ten clinical lessons. Autoimmun Rev 7:262–266PubMedCrossRefGoogle Scholar
  8. 8.
    Khamashta MA (ed) (2000) Hughes syndrome: antiphospholipid syndrome. Springer, LondonGoogle Scholar

Copyright information

© Clinical Rheumatology 2009

Authors and Affiliations

  1. 1.Dundee Epidemiology and Biostatistics Unit, Clinical and Population Sciences, and EducationUniversity of DundeeDundeeScotland
  2. 2.Nurse and Social WorkerAngusScotland

Personalised recommendations