Evidence base: Narcolepsy

A summary of the clinical trials, guidelines, key texts and online resources to help in the management of narcolepsy

Arachnoid cyst of the third ventricle causing secondary narcolepsy (Photograph: Author)
Arachnoid cyst of the third ventricle causing secondary narcolepsy (Photograph: Author)

 

Disappointingly, there is little controlled evidence to guide treatment choices and protocols in narcolepsy.

Clinical trials
Several randomised trials have assessed sodium oxybate, which is the newest, most effective and, unfortunately, most expensive drug for narcolepsy. Good results for efficacy are seen in all domains.

Sodium oxybate is considered an orphan drug and has not been assessed by NICE.

The Scottish Medicines Consortium examined the drug in 2006 for the specific treatment of cataplexy and concluded the case had not been made for cost effectiveness.8

However, the drug's license has since been expanded to include the other core symptoms of narcolepsy, which will presumably have an influence on any further economic considerations.

Guidelines
The most recent comprehensive guidelines were produced by the European Federation of Neurological Sciences in 2006.

There have been no significant developments in treatment strategies since then.

Key texts
Textbooks on sleep medicine tend to be unwieldy and geared more to an American readership.

A recent text more suited to a European approach covers all the sleep disorders from a neurological perspective, including narcolepsy with discussion of recent developments in its treatment and neurobiology.

Online
Many patients benefit from interacting with other patients, usually through the internet via patient support groups and forums.

Narcolepsy UK (www.narcolepsy.org.uk) is an increasingly influential resource and lobbying body which organises national meetings and has a website with useful information for both patients and doctors.

 Contributed by Dr Paul Reading, consultant neurologist, The James Cook University Hospital, Middlesbrough, North Yorkshire

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