Rheumatology Medical News about Hughes syndrome

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Patients experiences of a diagnosis of Hughes syndrome
Clinical Rheumatology, 05/27/09

Donnan PT et al. – This survey demonstrates 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.

Methods

Study to describe the experience of pts immediately prior to a diagnosis of Hughes syndrome (HS) or antiphospholipid syndrome and post-diagnosis
A questionnaire survey was carried out
Main outcome measures: experiences of people with a diagnosis of HS-
- No. of hospitalizations
- No. of consultants seen
- No. of miscarriages

Results

157 pts completed the questionnaire; response rate: 60.4%
85% were women; mean age: 46 yrs; median time to diagnosis: 3 yrs
Median number of consultants seen: 2 (max 19); median time in hospital pre-diagnosis of 10 days
Most common initial diagnoses: 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 pts indicated a lack of awareness among specialists and general practitioners

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