Superior semi-circular canal dehiscence syndrome: quantifying the effectiveness of treatment from the patient's perspective

Background Superior semi-circular canal dehiscence syndrome is a disorder characterised by auditory and vestibular symptoms that can significantly impact quality of life, and yet it has no disease-specific quality of life instrument. Method Thirty-six patients who underwent transmastoid superior semicircular canal resurfacing and plugging were included from an initial cohort of 60 surgically managed patients. A sub-cohort of 19 consecutive patients completed validated symptom and quality of life questionnaires before and after surgery. Of the 36 patients, 31 participated in a telephone semi-structured interview post-operatively. Results Following surgery, there was a statistically significant improvement in autophony index score (p = 0.02), symptom severity score (p < 0.001) and sound hypersensitivity (p = 0.01). Thematic analysis of telephone interviews suggested three main symptom themes: auditory hypersensitivity, dysequilibrium, headache and concentration difficulties. Dysequilibrium was found to persist post-operatively. Conclusion Surgery improves overall symptoms and quality of life. However, important symptom themes may be overlooked using the outcome measures that are currently available. A unified disease-specific outcome measure is urgently required to better understand the impact of symptoms and measure treatment effects.