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TM3-1 Idiopathic intracranial hypertension: consensus guidelines on investigation and management
  1. SP Mollan1,2,
  2. B Davis3,
  3. NC Silver4,
  4. S Shaw5,
  5. C Malucci6,7,
  6. BR Wakerley8,9,
  7. A Krishnan4,
  8. SV Chavda10,
  9. S Ramalingam10,
  10. J Edwards11,12,
  11. K Hemmings13,
  12. M Williamson13,
  13. MA Burdon2,
  14. G Hassan-Smith1,13,
  15. K Digre14,
  16. GT Liu15,
  17. RH Jensen16,
  18. AJ Sinclair1,2,13,17
  1. 1Neurometabolism, Institute of Metabolism and Systems Research, University of Birmingham, Edgbaston, B15 2TT, UK
  2. 2Birmingham Neuro-Ophthalmology, Queen Elizabeth Hospital, Birmingham, B15 2WB, UK
  3. 3Department of Neurology, University Hospital North Midlands NHS Trust, Stoke-on-Trent, ST4 6QG
  4. 4Department of Neurology, The Walton Centre NHS Foundation Trust, Liverpool, L9 7LJ, UK
  5. 5Department of Neurosurgery, University Hospital North Midlands NHS Trust, Royal Stoke University Hospital, Newcastle Road, Stoke-on-Trent, ST4 6QG, UK
  6. 6Department of Neurosurgery, The Walton Centre NHS Foundation Trust, Liverpool, L9 7LJ, UK
  7. 7Department of Paediatric Neurosurgery, Alder Hey Children’s NHS Foundation Trust, Liverpool L12 2AP, UK
  8. 8Department of Neurology, Gloucestershire Hospitals NHS Foundation Trust, GL53 7AG, UK
  9. 9Nuffield Department of Clinical Neurosciences, Oxford OX3 9DU, UK
  10. 10Department of Neuroradiology, University Hospitals Birmingham, Queen Elizabeth Hospital, Birmingham, B15 2WB, UK
  11. 11Department of Neurology, Sandwell and West Birmingham NHS Trust, City Hospital, Dudley Road, Birmingham, UK
  12. 12Department of Neurology, University Hospitals Birmingham, Queen Elizabeth Hospital, Birmingham, B15 2WB, UK
  13. 13IIH-UK, Tyne and Wear, NE38 7JX, UK
  14. 14Departments of Ophthalmology and Neurology, Moran Eye Center, University of Utah, Salt Lake City, Utah, USA
  15. 15Neuro-ophthalmology Services, Children’s Hospital of Philadelphia and Hospital of the University of Pennsylvania, Philadelphia, PA 19104, USA
  16. 16Danish Headache Center, Department of Neurology, Rigshospitalet-Glostrup, University of Copenhagen, Denmark
  17. 17Centre for Endocrinology, Diabetes and Metabolism, Birmingham Health Partners, B15 2TH, UK


Objectives The aim was to capture interdisciplinary expertise from a large group of clinicians, reflecting practice from across the UK and further, to inform subsequent development of a national consensus guidance for optimal management of Idiopathic Intracranial Hypertension.

Design Consensus guideline critically reviewed by the Association of British Neurologists, British Association for the Study of Headache, the Society of British Neurological Surgeons and the Royal College of Ophthalmologists.

Subjects An initial UK survey of attitudes and practice in IIH was sent to a wide group of physicians and surgeons.

Methods Between September 2015 and October 2017 a specialist interest group including neurology, neurosurgery, neuro-radiology, ophthalmology, nursing, primary care doctors, and patient representatives met. A comprehensive systematic literature review was performed to assemble the foundations of the statements.

Results Over twenty questions were constructed: One based on the diagnostic principles for optimal investigation of papilloedema and twenty-one for the management of IIH. 3 main principles were identified:

  1. to treat the underlying disease;

  2. to protect the vision and

  3. to minimise the headache morbidity.

Statements presented provide insight to uncertainties in IIH where research opportunities exist.

Conclusions In collaboration with many different specialists, professions and patient representatives we have developed guidance statements for the investigation and management of adult IIH.

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