Methods A systematic literature review of “IIH”;“Benign IH” and “pseudotumour cerebri” was followed by a SIG meeting, to identify the population, interventions, controls and outcomes (PICO) questions. Discrepant views were reflected in a questionnaire disseminated though a modified Delphi approach to district general and tertiary hospital interdisciplinary specialists.

Results 44/66 questionnaires were returned. 51% would image (CT/MRI) patients with definite papilloedema <24 hrs and 40% would image between 24–48 hrs. In these patients 84% would then proceed to venography (50:50, MRV:CTV), conducted within 48 hrs in 74% respondents.79% never diagnosed IIH in those with a lumbar puncture pressure <25 cm CSF. Referral for neurosurgical intervention was predominantly for visual deterioration (83%) with only 2% referring exclusively for headache management. Neurosurgical procedures varied: 48% ventriculoperitoneal shunting, 33% lumboperitoneal shunting, 5% optic nerve sheath fenestration, 14% other and 0% venous stenting. A consensus on follow-up times, according to papilloedema severity and visual function (perimetry), was obtained.

Conclusions Evidence for IIH management is minimal. Consensus on many aspects of management was demonstrated which will help establish a practical guideline.