Assessing Symptoms in the Clinical Interview
A complete clinical interview that assesses all 5 main narcolepsy symptoms is important for the differential diagnosis and provides clinical context when evaluating the results of sleep laboratory testing.1-3 For pediatric patients, including a caregiver in the clinical interview can be helpful to corroborate or refute the patient's report of sleepiness or to uncover cataplexy, especially in the case of younger patients who may not be able to describe their own symptoms.4,5
Clinical History and Symptom Assessment
- Obtain a detailed clinical history of associated symptoms.4-6
- Caregivers may be the primary source of information for younger children.
- Older children and adolescents should be questioned directly about their symptoms; caregivers may help provide additional insight and observation.
- Identify complaints of excessive daytime sleepiness.
- Children and adolescents may use terms such as “tiredness” or “lack of energy” to describe sleepiness.
- Caregivers or teachers may report hyperactivity, poor concentration, and “bad behavior.”
Questions to Ask During the Clinical Interview
To Assess Excessive Daytime Sleepiness, Ask Patients and Caregivers6,7:
- Is your child very difficult to wake up in the morning?
- Is your child constantly tired or sleepy during the day?
- Does your child fall asleep during school or other activities?
- Does your child take a nap during the day? If so, how long does it last and is it refreshing?
- Does your child exhibit hyperactivity, poor concentration/cognitive problems, or “bad behavior”?
To identify sleep habits, ask caregivers6:
- What time does your child go to bed and wake up on school days and nonschool days?
- How long does it take your child to fall asleep?
- How many times does your child wake up during the night? For how long?
Use the Epworth Sleepiness Scale for Children and Adolescents (ESS-CHAD) with patients and their caregivers to identify excessive daytime sleepiness.
The ESS-CHAD is not intended to make a narcolepsy diagnosis or replace complete evaluation by a sleep specialist.
To Assess Cataplexy, Ask Patients and Caregivers8,9:
- Has your child ever reported feeling sudden weakness in their legs, arms, head, or face when having fun or feeling excited, angry, or laughing?
- How often have you noticed the following in your child:
- Falling down?
- Head dropping?
- Tongue sticking out, mouth opening, eyelids drooping, eyes closing, or eyes rolling?
Patients and caregivers can use the Sleep/Cataplexy Diary to identify possible events and discuss them with a sleep specialist.
The Sleep/Cataplexy Diary is not intended to make a narcolepsy diagnosis or replace complete evaluation by a sleep specialist.
To Assess Hallucinations, Ask Patients and Caregivers1,6,7,10:
- How often does your child have dreamlike experiences or see or hear things that are not really there when falling asleep or waking up?
To Assess Sleep Paralysis, Ask Patients and Caregivers4:
- How often does your child feel unable to move or speak when falling asleep or waking up?
To Assess Sleep Disruption, Ask Patients and Caregivers6,7:
- Does your child still take naps?
- Is your child very difficult to wake up in the morning?
- How often does your child wake up during the night? For how long?
- Does your child have trouble getting back to sleep after waking up during the night?
- American Academy of Sleep Medicine. Central disorders of hypersomnolence. In: The International Classification of Sleep Disorders – Third Edition (ICSD-3) Online Version. Darien, IL: American Academy of Sleep Medicine; 2014.
- Littner MR, Kushida C, Wise M, et al.; Standards of Practice Committee of the American Academy of Sleep Medicine. Practice parameters for clinical use of the multiple sleep latency test and the maintenance of wakefulness test. Sleep. 2005;28(1):113-121.
- Pelayo R, Lopes MC. Narcolepsy. In: Lee-Chiong TL, ed. Sleep: A Comprehensive Handbook. Hoboken, NJ: Wiley and Sons, Inc.; 2006:145-149.
- Babiker MOE, Prasad M. Narcolepsy in children: a diagnostic and management approach. Pediatr Neurol. 2015;52(6):557-565.
- Guilleminault C, Brooks SN. Excessive daytime sleepiness: a challenge for the practicing neurologist. Brain. 2001;124(Pt 8):1482-1491.
- Luginbuehl M, Kohler WC. Screening and evaluation of sleep disorders in children and adolescents. Child Adolesc Psychiatric Clin N Am. 2009;18(4):825-838.
- Nevsimalova S. The diagnosis and treatment of pediatric narcolepsy. Curr Neurol Neurosci Rep. 2014;14(8):469.
- Benmedjahed K, Wang YG, Lambert J, et al. Assessing sleepiness and cataplexy in children and adolescents with narcolepsy: a review of current patient-reported measures. Sleep Med. 2017;32:143-149.
- Wang YG, Benmedjahed K, Lambert J, et al. Assessing narcolepsy with cataplexy in children and adolescents: development of a cataplexy diary and the ESS-CHAD. Nat Sci Sleep. 2017;9:201-211.
- Nevsimalova S. Narcolepsy in childhood. Sleep Med Rev. 2009;13(2):169-180.