Red Flags for early referral of people with symptoms suggestive of narcolepsy: a report from a national multidisciplinary panel

Objective: Narcolepsy is a lifelong disease, manifesting with excessive daytime sleepiness and cataplexy, arising between childhood and young adulthood. The diagnosis is typically made after a long delay that burdens the disease severity. The aim of the project, promoted by the \u201cAssociazione Italiana Narcolettici e Ipersonni\u201d is to develop Red Flags to detect symptoms for early referral, targeting non-sleep medicine specialists, general practitioners, and pediatricians. Materials and methods: A multidisciplinary panel, including patients, public institutions, and representatives of national scientific societies of specialties possibly involved in the diagnostic process of suspected narcolepsy, was convened. The project was accomplished in three phases. Phase 1: Sleep experts shaped clinical pictures of narcolepsy in pediatric and adult patients. On the basis of these pictures, Red Flags were drafted. Phase 2: Representatives of the scientific societies and patients filled in a form to identify barriers to the diagnosis of narcolepsy. Phase 3: The panel produced suggestions for the implementation of Red Flags. Results: Red Flags were produced representing three clinical pictures of narcolepsy in pediatric patients ((1) usual sleep symptoms, (2) unusual sleep symptoms, (3) endocrinological signs) and two in adult patients ((1) usual sleep symptoms, (2) unusual sleep symptoms). Inadequate knowledge of symptoms at onset by medical doctors turned out to be the main reported barrier to diagnosis. Conclusions: This report will hopefully enhance knowledge and awareness of narcolepsy among non-specialists in sleep medicine in order to reduce the diagnostic delay that burdens patients in Italy. Similar initiatives could be promoted across Europe

Narcolepsy is a paediatric disease: Use red flags to recognise it

Rationale - Narcolepsy is a chronic rare disease that frequently develops in children. It is characterised by excessive daily sleepiness, cataplexy, sleep paralysis, hypnagogic and hypnopompic hallucinations as well as disturbed nocturnal sleep. Moreover, psychiatric disorders, obesity and early puberty can complete the clinical picture. Narcolepsy diagnosis is often delayed and many patients receive wrong diagnoses and inappropriate treatments. Objective - The Associazione Italiana Narcolettici e Ipersonni (AIN) promoted the “Red Flags Project” in order to increase early detection by doctors that visit subjects with narcolepsy symptoms. The project has been developed by a multidisciplinary panel including main Scientific Societies involved in narcolepsy diagnosis, with the methodological contribution of the Neurological Sciences Institute of Bologna University and Istituto Superiore di Sanità. Method - The project has been divided into three phases. Phase 1: preparation of a questionnaire aimed at defining diagnostic delay, barriers and solutions and questionnaire filling in by Scientific Societies representatives and AIN members. Phase 2: shaping of typical and atypical narcolepsy pictures in adults and in children, on whose basis Red Flags have been defined. Phase 3: the panel has produced suggestions aimed at Red Flags spreading and barriers overcoming. Results - Narcolepsy Red Flags are 5 paradigmatic clinical pictures: 3 for children and 2 for adults. The limited early symptoms knowledge of doctors, in particular on symptoms different from sleep attacks, is the main barrier to diagnosis. Conclusions - “Red Flags Project” deals with diagnostic delay, proposing paradigmatic clinical pictures, in order to arouse diagnostic suspect and suggest targets of Red Flags spreading