Excessive Daytime Sleepiness (EDS)/narcolepsy

PAEDIATRIC

  • If any of the following are present or suspected, please refer the patient to the emergency department (via ambulance if necessary) or follow local emergency care protocols or seek emergent medical advice if in a remote region.

    • No emergency indicators identified; routine prioritisation applies
    • Refer to local HealthPathways or local guidelines
    • In the majority of cases, it is thought inappropriate for children to wait more than 6 months for an outpatient initial appointment
    • Next of kin or person(s) who is legally responsible for patient consent, with the exception of children under guardianship orders with the Department of Child Safety, Seniors and Disability Services, should be present at the first outpatient appointment.
    • If you have a reason to suspect a child in Queensland is experiencing harm, or is at risk of experiencing harm, you need to contact Child Safety Services
    • Statement of intent – the prioritisation of health services for children and young people in the child protection system

      • Clinical Resources

    • Resources for DIMS/circadian rhythm disorders considered
    • Sleep Health Foundation: Narcolepsy
    • Brain Foundation: Narcolepsy
    • Exclude iron deficiency, hypothyroidism, coeliac disease or other clinically indicated causes of daytime tiredness.
Minimum Referral Criteria
Category 1
(appointment within 30 calendar days)
  • Severe daytime sleepiness in the absence of sleep scheduling or hygiene problems
  • Features of cataplexy, sleep paralysis or hallucinations
  • A child currently in out of home care (OOHC) or at risk of entering or leaving OOHC, where they have previously been on a waiting list for this problem and were removed without receiving a service
Category 2
(appointment within 90 calendar days)
  • History of daytime tiredness and/or sleepiness with new onset poor concentration and learning difficulties despite adequate nighttime sleep
Category 3
(appointment within 365 calendar days)
  • History of daytime tiredness and/or sleepiness with physician/parent/patient concern for potential EDS/narcolepsy despite adequate nighttime sleep.
  • Other diagnoses already considered including sleep phase disorders and disorders of initiation and maintenance of sleep

Please insert the below information and minimum referral criteria into referral

1. Reason for request Indicate on the referral

  • To establish a diagnosis
  • For treatment or intervention
  • For advice and management
  • For specialist to take over management
  • Reassurance for GP/second opinion
  • For a specified test/investigation the GP can't order, or the patient can't afford or access
  • Reassurance for the patient/family
  • For other reason (e.g. rapidly accelerating disease progression)
  • Clinical judgement indicates a referral for specialist review is necessary

2. Essential referral information Referral will be returned without this

  • Detailed sleep history including sleep scheduling and hygiene
  • Features of cataplexy, sleep paralysis or hallucinations present or absent
  • Detailed medication (including illicit) history
  • Assessment of relevant contributory factors such as psychosocial and environmental contributors
  • Presenting complaint and reason for referral
  • Details of any family history of narcolepsy/cataplexy
  • Confirmation of OOHC (where appropriate)

3. Additional referral information Useful for processing the referral

  • No additional information

4. Request

  • Patient's Demographic Details

    • Full name (including aliases)
    • Date of birth
    • Residential and postal address
    • Telephone contact number/s – home, mobile and alternative
    • Medicare number (where eligible)
    • Name of the parent or caregiver (if appropriate)
    • Preferred language and interpreter requirements
    • Identifies as Aboriginal and/or Torres Strait Islander

    Referring Practitioner Details

    • Full name
    • Full address
    • Contact details – telephone, fax, email
    • Provider number
    • Date of referral
    • Signature

    Relevant clinical information about the condition

    • Presenting symptoms (evolution and duration)
    • Physical findings
    • Details of previous treatment (including systemic and topical medications prescribed) including the course and outcome of the treatment
    • Body mass index (BMI)
    • Details of any associated medical conditions which may affect the condition or its treatment (e.g. diabetes), noting these must be stable and controlled prior to referral
    • Current medications and dosages
    • Drug allergies
    • Alcohol, tobacco and other drugs use

    Reason for request

    • To establish a diagnosis
    • For treatment or intervention
    • For advice and management
    • For specialist to take over management
    • Reassurance for GP/second opinion
    • For a specified test/investigation the GP can't order, or the patient can't afford or access
    • Reassurance for the patient/family
    • For other reason (e.g. rapidly accelerating disease progression)
    • Clinical judgement indicates a referral for specialist review is necessary

    Clinical modifiers

    • Impact on employment
    • Impact on education
    • Impact on home
    • Impact on activities of daily living
    • Impact on ability to care for others
    • Impact on personal frailty or safety
    • Identifies as Aboriginal and/or Torres Strait Islander

    Other relevant information

    • Willingness to have surgery (where surgery is a likely intervention)
    • Choice to be treated as a public or private patient
    • Compensable status (e.g. DVA, Work Cover, Motor Vehicle Insurance, etc.)

  • If any of the following are present or suspected, please refer the patient to the emergency department (via ambulance if necessary) or follow local emergency care protocols or seek emergent medical advice if in a remote region.

    • Please note that where appropriate and where available, the referral may be streamed to an associated public allied health and/or nursing service.  Access to some specific services may include initial assessment and management by associated public allied health and/or nursing, which may either facilitate or negate the need to see the public medical specialist.
    • A change in patient circumstance (such as condition deteriorating, or becoming pregnant) may affect the urgency categorisation and should be communicated as soon as possible.
    • Please indicate in the referral if the patient is unable to access mandatory tests or investigations as they incur a cost or are unavailable locally.

Last updated: 3 December 2024

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