Objective: To assess the overall impact of Behçet's syndrome (BS) on quality of life and the specific impact of the type and number of symptoms on the quality of life of adults with BS.
Methods: A questionnaire was mailed to the 641 adult members of the Behçet's Syndrome Society in the UK. Participants provided information on socio-demographic characteristics, disease duration, current symptoms (mouth ulcers, genital ulcers, skin lesions, fatigue, joint problems, stomach/bowel problems, eye problems, pathergy reaction, headaches and other neurological problems), symptom control and quality of life (the EQ-5D index). Linear regression was used to test the associations of the type and number of symptoms with the EQ-5D index.
Results: Of the 447 members, 400 who returned the questionnaires had a confirmed diagnosis of BS. Of them, 362 had information on the variables selected for this analysis (76% females and 94% white British). The mean EQ-5D index was 0.47 (S.D. 0.38). Of the 10 symptoms assessed, joint problems had the strongest impact on quality of life, followed by neurological problems, pathergy reaction and stomach/bowel problems (adjusted coefficients of -0.15, -0.13, -0.11 and -0.18, respectively). Furthermore, the number of symptoms was significantly related to the EQ-5D index after adjustment for socio-demographic characteristics, disease duration and symptom control. The EQ-5D index decreased by -0.05 U for every additional symptom reported.
Conclusions: BS has a considerable impact on quality of life. Both the type and number of symptoms affect the quality of life of adults with BS.