Idiopathic intracranial hypertension VISION (venous intervention versus shunting in IIH for optic nerve disc swelling) trial: patient perspective questionnaire.

INTRODUCTION: Headaches, visual problems and tinnitus are symptoms of Idiopathic Intracranial Hypertension (IIH) which resolve with reduction of CSF pressure. Impaired cranial venous outflow has been implicated in the pathogenesis and there is evidence of good treatment results in IIH using venous sinus stenting. We are currently initiating a multi-centre randomised controlled trial, the VISION study (Venous Intervention versus Shunting in IIH for Optic Disc Swelling) comparing radiological (venous sinus stenting) to surgical intervention (CSF shunting). As part of the preparations for VISION we made a basic questionnaire available to members of the website IIH UK ( www.iih.org.uk ).

METHODS: 10-point questionnaire pertaining to IIH diagnosis, symptoms and management using www.surveymonkey.com .

RESULTS: 250 questionnaires were returned. 95.6% of respondents were female, mostly ≤40 years of age. 70% were diagnosed in the last 5 years, but only 35% were diagnosed less than a year after onset of symptoms. 59.4% of patients had not undergone any radiological/surgical intervention, 34.9% had had CSF diversion, 3.6% venous stenting and 2.0% had stent plus shunt. 16.8% indicated their lives were most affected by tinnitus and 18.1% by visual problems, but 49.6% said they were most affected by their headaches. 81% of patients indicated they would be happy to participate in a randomised trial comparing the two treatment options of venous stenting and CSF shunting.

CONCLUSION: IIH patients want to be actively involved in their treatment and are favourably disposed towards clinical research. Variation exists in treatment modalities offered. There are individual differences regarding impact of symptoms.