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Consensus recommendations for the assessment and management of idiopathic intracranial hypertension in children and young people
  1. Sam Amin1,
  2. Marie Monaghan1,
  3. Katharine Forrest2,
  4. Pooja Harijan3,
  5. Vishal Mehta4,
  6. Matthew Moran1,
  7. Bina Mukhtyar5,
  8. Brinda Muthusamy3,
  9. Alasdair Parker3,
  10. Prab Prabhakar6,
  11. William P Whitehouse7,7,
  12. Deepa Krishnakumar8
  1. 1University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK
  2. 2NHS Greater Glasgow and Clyde, Glasgow, UK
  3. 3Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK
  4. 4Hull University Teaching Hospitals NHS Trust, Hull, UK
  5. 5Norfolk and Norwich University Hospitals NHS Foundation Trust, Norwich, UK
  6. 6Great Ormond Street Hospital for Children, London, UK
  7. 7School of Human Development, University of Nottingham, Nottingham, UK
  8. 8Addenbrooke's Hospital, Cambridge, UK
  1. Correspondence to Dr Marie Monaghan, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK; marie.monaghan{at}uhbw.nhs.uk

Abstract

Background Idiopathic intracranial hypertension (IIH) is a potentially disabling condition. There is a lack of evidence and national guidance on how to diagnose and treat paediatric IIH, leading to variation in clinical practice. We conducted a national Delphi consensus via the Children’s Headache Network to propose a best-practice diagnostic and therapeutic pathway.

Methods The Delphi process was selected as the most appropriate methodology for examining current opinion among experts in the UK. 104 questions were considered by 66 healthcare professionals, addressing important aspects of IIH care: assessment, diagnosis, treatment, follow-up and surveillance. General paediatricians, paediatric neurologists, ophthalmologists, opticians, neuroradiologists and neurosurgeons with a clinical interest or experience in IIH, were invited to take part.

Results The Delphi process consisted of three rounds comprising 104 questions (round 1, 67; round 2, 24; round 3 (ophthalmological), 13) and was completed between March 2019 and August 2021. There were 54 and 65 responders in the first and second rounds, respectively. The Delphi was endorsed by the Royal College of Ophthalmologists, which engaged 59 ophthalmologists for round 3.

Conclusions This UK-based Delphi consensus process reached agreement for the management of paediatric IIH and has been endorsed by the Children’s Headache Network and more broadly, the British Paediatric Neurology Association. It provides a basis for a pragmatic clinical approach. The recommendations will help to improve clinical care while minimising under and over diagnosis.

  • Neurology
  • Paediatrics
  • Primary Health Care
  • Ophthalmology
  • Neurosurgery

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

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Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

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Footnotes

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  • Collaborators N/A.

  • Contributors All individuals listed as authors meet the appropriate authorship criteria, and nobody who qualifies for authorship has been omitted from the list. The authors and contributors have approved the acknowledgement of their contributions. All the authors had complete access to the study data that supports the publication. SA, KF, PH, VM, BMukhtyar, BMuthusamy, AP, PP, WPW and DK designed the questionnaire, analysed the data and drafted the manuscript. MMonaghan and MMoran analysed the data and drafted the manuscript. SAmin is guarantor.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.