NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias Clinical organisation/ follow-up of narcolepsy in Norway Ragnhild Berling Grande MD, PhD, Neurologist NevSom, Oslo University Hospital Nordic Narcolepsy Symposium, Oslo, 6.febr. 2020
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NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
Clinical organisation/ follow-up of narcolepsy in Norway Ragnhild Berling Grande
7. Ped/Neur: follow-up, big variation in follow-up habits, the doctor decides
8. When medication «stable» – back to GP or Ped/Neur/privat- yearly follow-neurology dept.
NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
Multidiciplinary care
NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
Multidiciplinary care – never/ rarely offered
NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
• PAKKEFORLØP: Standardized normative patient treatment-and follow-up i Norway
NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
• PAKKEFORLØP: Standardized normative patient treatment-and follow-up i Norway – no such system exists for Narcolepsy
NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
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NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
CNS-hypersomnias/ Narcolepsy NOT AT ALL mentioned in a new and very important brain-health-strategy. Sleep-disorders are only mentioned as « Sleep-disorders» on some lists of diagnoses. This is very dissappointing.
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NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
Norwegian online clinical «handbooks/ guidelines on Narcolepsy»: Generell veileder i pediatri and NevroNEL
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NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
NevroNEL: the list is very long….
• Lots of disorders:
• ADEM (akutt disseminert encefalomyelitt)
• Akutt hemorrhagisk leukoencefalitt (AHLE) Camptocormia og dropped head
Discuss aims for the treatment and patients needs and wishes
-Comorbid disorders MUST be diagnosed and treated. Be
aware of depression.
Issues for Women
o Contraception (check
interactions)
o Pre-conception
o Pregnancy
o Breastfeeding
Information/ Support
Organisations
o Written info./
webpages/YouTube-
videos/app/e-learning
o Centre of Expertice
nevsom.no
o Patient organisation
sovnforeningen.no
FOLLOW-UP
o Specialist doctor
o Frequency due to
needs
o Multidiciplinary
o Bring a friend
o Stay in contact with
GP
NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
Checklist 2 – Narcolepsy. FOLLOW-UP
Current symptoms o Excessive daytime sleepiness/ sleep-attacks o Cataplexy (type, frequency, falls?) o Other symptoms
Patient education/ level of knowledge on narcolepsy o Check level of knowledge. Often need to repeat general information? Regard patients
Health Literacy
o Source of information
o Knowledge of centre of expertice? Know the website? www.nevsom.no
o Knowledge of Support Organisations? Membership? Know the website?
www.sovnforeningen.no
How is daily life? o Education (medical certificat)
o Work/employment
o Leisure
o Psychosocial
o Relationships/family life
o Living arrangements
o Financial
o Driving/ public transport
o Travelling abroad (medical certificat)
Medication (complete list, contraceptives,
herbs)
o Adherence
o Effect
o Side effects
o Interactions
Multidisiplinary o Met social advisor?
o Met/ phonecall nurse?
o Other?
Practice of self care? o Powernaps 15-20 min.
o Regular sleep rutines, no sleep deprivation
o Physical activity, sport
o Healthy lifestyle, outdoors, daylight
o Avoid big heavy meals
o Information to family/friends
Common challenges ? o Concentration
o Memory
o Mood changes
o Depression/anxiety
Women o Family planning status
o Contraception (safe?
check interactions)
Summary o Explain any changes
to treatment/
management o Agree on treatment
goal/ plan o Patients questions?
Follow-up o Specialist with
experience
o Frequency due to
needs
o Mulidiciplinary
o Stay in contact with
GP
NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
How can we fill the GAP in Norway? • Mandatory education on sleep/ sleep disorders in medical education/
neuro/ped-spezialisation?
• Educate somnologists? How? Where?
• Sleep disorders into ALL already existing national health strategies?
• Copy successful models from other countries?
• Copy succesful models for «similar» complex chronic neurological diagnoses in Norway?- «Pakkeforløp», «ParkinsonNet» or 3.rd line specialist treatment centres like i.e. SSE- Epilepsy Centre in Oslo University Hospital)?
• More Patient involvement ?
• More attention?
NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias
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NevSom – Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias