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.
From the article:
Management: therapeutic LP
CSF pressure, if over 28 cm CSF (21 mm Hg) should be reduced down to 20–25 cm CSF (15–18 mm Hg).
The maximum number of (therapeutic) LPs a patient should have over the course of their illness is five, as other therapeutic options should be instigated before this point.
Management: weight management
A dietetic service should be available for weight management for patients with IIH.
Overweight or obese patients with IIH should be referred to a dietician for weight management or to a weight management team.
Management: first-line therapy in patients with IIH who do not have visual impairment
There was no consensus on medical management but the most selected answer by 46% of responders was that acetazolamide should be considered for all patients as first-line medical treatment, regardless of their BMI. This did not reach the threshold for consensus. The leading answer after ‘acetazolamide’ (46%) or ‘other’ (26%) was ‘information, general advice, safety netting but no drug treatment for now’ (18%). A minority of respondents supported topiramate (4%), no intervention (4%) or surgical approaches (2%).
Management: first-line therapy in patients with new visual impairment/loss of vision
If a patient is taking acetazolamide, blood urea, electrolytes and bicarbonate levels should be checked. Bicarbonate should be corrected when the value is equal to or lower than 18 mmol/L.
Management: second line
Repeated therapeutic LP should be offered when visual changes progress and there is a threat to vision on medical management and/or when symptoms are not responsive to medical management.
Management: neurosurgical
ICP bolt monitoring for 48 hours should be considered for patients with persistently raised LP opening pressure measurements (on two LPs) and papilloedema.
VSS should be considered if there is evidence of stenosis of the dominant venous sinus.
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