New guideline on narcolepsy provides more guidance for doctors and better care for sufferers

Sudden attacks of falling asleep during the day, pronounced daytime sleepiness, disturbed night-time sleep or a sudden loss of muscle tone in response to strong emotions: Narcolepsy is a chronic neurological disease that often has a significant impact on everyday life, school, appointments and social participation. It affects children, adolescents and adults alike. As it is a rare disorder, it is often diagnosed late and many doctors outside of specialised centres are only familiar with it to a limited extent.

To improve care, the German Society of Neurology (DGN), together with a network of other scientific associations, has now published the updated S2k guideline "Treatment of narcolepsy in adults and children". It replaces earlier versions from 2008 and 2012 and takes into account the latest scientific findings and new treatment options. Prof Dr Ulf Kallweit, holder of the endowed professorship for narcolepsy and hypersomnolence research at Witten/Herdecke University (UW/H), played a leading role in the development of the guideline.

"The guideline is intended to provide doctors with clear, practical guidance on how people with narcolepsy can be treated in an evidence-based manner today. Such guidelines are particularly important for rare diseases because not all treating physicians deal with this clinical picture on a daily basis," explains Prof Kallweit. "We are also using the publication to address patients and their relatives so that they can get a better picture of their treatment options."

The most important aspects and innovations of the guideline at a glance:

• Focus on treatment: The guideline is dedicated exclusively to the treatment of narcolepsy - in children, adolescents and adults.
• Differentiation according to main symptoms: Treatment recommendations are specifically orientated towards the main symptoms such as severe daytime sleepiness, cataplexy (sudden loss of muscle tone) and disturbed night-time sleep.
• More authorised drugs: New active ingredients expand the drug options and enable more individualised treatment. A detailed list, clustered according to symptoms, provides an overview.
• Improved care for children and adolescents: For the first time, more approved treatment options are also available for younger sufferers, which are named in the guideline.
• Differentiated treatment options: The guideline offers concrete decision-making aids (first, second and combination therapies) for clinical practice.
   

"The major advance is that we can now provide much more individualised treatment," says Prof. Kallweit. "If a therapy is not effective enough or is not well tolerated, alternatives are now available - this improves care noticeably."

In addition to drug therapy, the guideline also highlights non-pharmacological measures. "It's not just about medication, but also about empowering those affected to structure their everyday lives better and influence symptoms themselves to a certain extent," emphasises the sleep researcher. For example, the experts recommend planned short sleep phases to minimise the restrictions caused by daytime sleepiness. According to the neurologist, the combination of treatment approaches is crucial for a long-term improvement in quality of life.

Involvement of those affected

In order to specifically incorporate the perspective of patients into the guideline, the editors invited representatives from self-help groups and associations to join the working group. Their experiences and suggestions for improving treatments were not only incorporated into the discussions, but were also recorded in a separate section of the guideline.

The new guideline emphasises the special role of sleep research at Witten/Herdecke University. The professorship of Prof. Dr Ulf Kallweit with its focus on narcolepsy is unique in Germany and makes an important contribution to clinical care and the further development of therapy concepts.

Further information: The guideline "Treatment of narcolepsy in adults and children" is available online: https://www.dgn.org/leitlinie/behandlung-der-narkolepsie-bei-erwachsenen-und-kindern