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General neurology
Review
Idiopathic intracranial hypertension: consensus guidelines on management
  1. Susan P Mollan1,2,
  2. Brendan Davies3,
  3. Nick C Silver4,
  4. Simon Shaw5,
  5. Conor L Mallucci6,7,
  6. Benjamin R Wakerley8,9,
  7. Anita Krishnan4,
  8. Swarupsinh V Chavda10,
  9. Satheesh Ramalingam10,
  10. Julie Edwards11,12,
  11. Krystal Hemmings13,
  12. Michelle Williamson13,
  13. Michael A Burdon2,
  14. Ghaniah Hassan-Smith1,12,
  15. Kathleen Digre14,
  16. Grant T Liu15,
  17. Rigmor Højland Jensen16,
  18. Alexandra J Sinclair1,2,12,17
    1. 1 Metabolic Neurology, Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK
    2. 2 Birmingham Neuro-Ophthalmology, Queen Elizabeth Hospital, Birmingham, UK
    3. 3 Department of Neurology, University Hospital North Midlands NHS Trust, Stoke-on-Trent, UK
    4. 4 Department of Neurology, The Walton Centre NHS Foundation Trust, Liverpool, UK
    5. 5 Department of Neurosurgery, University Hospital North Midlands NHS Trust, Royal Stoke University Hospital, Stoke-on-Trent, UK
    6. 6 Department of Neurosurgery, The Walton Centre NHS Foundation Trust, Liverpool, UK
    7. 7 Department of Paediatric Neurosurgery, Alder Hey Children’s NHS Foundation Trust, Liverpool, UK
    8. 8 Department of Neurology, Gloucestershire Hospitals NHS Foundation Trust, Cheltenham, UK
    9. 9 Nuffield Department of Clinical Neurosciences, John Radcliffe Hospital, Oxford, UK
    10. 10 Department of Neuroradiology, University Hospitals Birmingham, Queen Elizabeth Hospital, Birmingham, UK
    11. 11 Department of Neurology, Sandwell and West Birmingham NHS Trust, Birmingham, UK
    12. 12 Department of Neurology, University Hospitals Birmingham, Queen Elizabeth Hospital, Birmingham, UK
    13. 13 IIH-UK charity, Tyne & Wear, UK
    14. 14 Departments of Ophthalmology and Neurology, Moran Eye Center, University of Utah, Salt Lake City, Utah, USA
    15. 15 Neuro-ophthalmology Services, Children’s Hospital of Philadelphia and Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania, USA
    16. 16 Danish Headache Center, Department of Neurology, Rigshospitalet-Glostrup, University of Copenhagen, Copenhagen, Denmark
    17. 17 Centre for Endocrinology, Diabetes and Metabolism, Birmingham Health Partners, Birmingham, UK
    1. Correspondence to Dr Alexandra J Sinclair, Metabolic Neurology, Institute of Metabolism and Systems Research, University of Birmingham, Birmingham B15 2TT, UK; a.b.sinclair{at}bham.ac.uk

    Abstract

    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 (IIH).

    Methods Between September 2015 and October 2017, a specialist interest group including neurology, neurosurgery, neuroradiology, ophthalmology, nursing, primary care doctors and patient representatives met. An initial UK survey of attitudes and practice in IIH was sent to a wide group of physicians and surgeons who investigate and manage IIH regularly. A comprehensive systematic literature review was performed to assemble the foundations of the statements. An international panel along with four national professional bodies, namely the Association of British Neurologists, British Association for the Study of Headache, the Society of British Neurological Surgeons and the Royal College of Ophthalmologists critically reviewed the statements.

    Results Over 20 questions were constructed: one based on the diagnostic principles for optimal investigation of papilloedema and 21 for the management of IIH. Three 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.

    • headache
    • benign intracran hyp
    • clinical neurology
    • neuroophthalmology
    • neurosurgery

    This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

    https://doi.org/10.1136/jnnp-2017-317440

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      Footnotes

      • Contributors SPM (neuro-ophthalmology): literature review, conception and design of the statement, interpretation of the survey results and drafting and review of the manuscript. BD, NCS, BRW and AK (neurology): design of the statement, interpretation of the survey results and critical review of the manuscript. SS and CLM (neurosurgery): design of the statement, interpretation of the survey results and critical review of the manuscript. SVC and SR (neuroradiology): design of the statement, interpretation of the survey results and critical review of the manuscript. JE (specialist nurse in headache): design of the statement, interpretation of the survey results and critical review of the manuscript. KH (patient representative of IIH UK): design of the statement, interpretation of the survey results and critical review of the manuscript. MW (patient representative of IIH UK): design of the statement; interpretation of the survey results and critical review of the manuscript. MAB (neuro-ophthalmology): design of the statement, interpretation of the survey results and critical review of the manuscript. GH-S (neurology): literature review and compilation of the survey results. KD, GTL and RHJ (international reviewer): critical review of the manuscript. AJS: Chair of the committee, concept and design of the statement, interpretation of the results and critical review of the manuscript. All authors read and approved the final manuscript.

      • Funding AJS is funded by an NIHR Clinician Scientist Fellowship (NIHR-CS-011-028) and by the Medical Research Council, UK (MR/K015184/1). KD is supported in part by an Unrestricted Grant from Research to Prevent Blindness, Inc, New York, New York, to the Department of Ophthalmology & Visual Sciences, Moran Eye Center, University of Utah.

      • Competing interests None declared.

      • Patient consent Not required.

      • Provenance and peer review Commissioned; externally peer reviewed.

      • Collaborators Anderson J, Cambridge University Hospitals NHS Foundation Trust, Hills Road, Cambridge, CB2 0QQ, UK. Goadsby PJ, Department of Neurology, King’s College Hospital, London, UK and NIHR-Wellcome Trust Clinical Research Facility, King’s College Hospital, London, UK. Matthews TD, Birmingham Neuro-Ophthalmology, Queen Elizabeth Hospital,Birmingham, B15 2WB, UK. Hoffmann J, Department of Systems Neuroscience, University Medical Center Hamburg-Eppendorf (UKE), Martinistrasse 52, 20246 Hamburg, Germany. O’Sullavin E, Kings College Hospital, London, UK. Shah PS, Institute of Neurological Sciences, Queen Elizabeth University Hospital, 1345 Govan Road, Glasgow, G51 4TF, Scotland. Idiopathic Intracranial Hypertension: consensus guidelines collaborative group.