Patterns of presentation and diagnosis of patients with Wegener's granulomatosis: ENT aspects

Design: a cross-sectional study. Participants: One hundred and ninety-nine patients with Wegener's granulomatosis belonging to a patient self-help group. Main outcome measures: Mode of initial presentation; diagnosis timescales and delay; rhinologic involvement; and treatment. Results: Sixty-three per cent of patients initially presented with ENT-related symptoms. Ninety-two per cent faced a delay in their diagnosis of more than one month, a pattern which has not improved over the last few decades and which compares unfavourably with North American figures. Rhinologic and otologic symptoms are a common occurrence in up to 85 and 50 per cent of Wegener's granulomatosis patients, respectively, attracting varying degrees of targeted treatment. Conclusions: As sinonasal and other ENT symptoms are so common at the presentation of Wegener's granulomatosis, it is clear that the otolaryngologist has an important role in its diagnosis and treatment. There are long delays in the diagnosis and possible under-treatment of the ENT symptoms of this condition, highlighting the need for greater awareness, particularly in the ENT community.