[Symptoms, effects on quality of life, judgement and expectations of treatment in active ankylosing spondylitis: the patient's view].

Symptoms, Effects on Quality of Life, Judgement and Expectations of Treatment in Active Ankylosing Spondylitis: The Patient's View.In ankylosing spondylitis uncertainty prevails among rheumatologists on how to define and measure activity. In the present study the patient's view of activity was evaluated. What does active ankylosing spondylitis mean for the patient? In a standardized interview the patient was asked to describe, from his own experience, what active ankylosing spondylitis means, what bothers him most, what helps most, and what he expects from therapy. For the patient, active ankylosing spondylitis means pain (99 responses), mobility restriction (19), muscle tension (10), inability to stay supine (6), restriction in chest mobility (5) and dyspnea (5). Fatigue was mentioned by two patients. In active states patients are mainly bothered by pain (77), mobility restriction (55), consequences for social life (20) and work (18), disturbed sleep (17) and difficult breathing (16). Drugs (84) and physical activity (42) were judged the best treatments during active ankylosing spondylitis. It was no surprise that pain and mobility restriction were cited most often by the patients. Breathing difficulties were cited rather often, whereas fatigue seems not to play an important role for most patients. The results suggest that modern rheumatology may have underestimated the relevance of difficult breathing and paid too much attention to fatigue.