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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;9:201-211doi: 10.2147/NSS.S140143.
Wang, Y. G., Benmedjahed, K., Lambert, J., Evans, C. J., Hwang, S., Black, J., & Johns, M. W. (2017). Assessing narcolepsy with cataplexy in children and adolescents: development of a cataplexy diary and the ESS-CHAD. Nature and science of sleep, 9201-211. https://doi.org/10.2147/NSS.S140143
Wang, Y Grace, et al. "Assessing narcolepsy with cataplexy in children and adolescents: development of a cataplexy diary and the ESS-CHAD." Nature and science of sleep vol. 9 (2017): 201-211. doi: https://doi.org/10.2147/NSS.S140143
Wang YG, Benmedjahed K, Lambert J, Evans CJ, Hwang S, Black J, Johns MW. Assessing narcolepsy with cataplexy in children and adolescents: development of a cataplexy diary and the ESS-CHAD. Nat Sci Sleep. 2017 Aug 14;9:201-211. doi: 10.2147/NSS.S140143. eCollection 2017. PMID: 28860883; PMCID: PMC5565379.
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Nat Sci Sleep. 2017 Aug 14;9:201-211. doi: 10.2147/NSS.S140143. eCollection 2017.

Assessing narcolepsy with cataplexy in children and adolescents: development of a cataplexy diary and the ESS-CHAD.

Nature and science of sleep

Y Grace Wang, Khadra Benmedjahed, Jérémy Lambert, Christopher J Evans, Steve Hwang, Jed Black, Murray W Johns

Affiliations

  1. Clinical Development, Jazz Pharmaceuticals, Palo Alto, CA, USA.
  2. Patient-Centered Outcomes, Mapi, Lyon, France.
  3. Endpoint Outcomes, Boston, MA, USA.
  4. Sleep Medicine, Stanford Sleep Medicine Center, Redwood City, CA, USA.
  5. Epworth Sleep Centre, East Melbourne, VIC, Australia.

PMID: 28860883 PMCID: PMC5565379 DOI: 10.2147/NSS.S140143

Abstract

OBJECTIVE: The aim of this study was to qualitatively evaluate concepts for incorporation into a daily diary to capture cataplexy frequency and to assess the content validity of the Epworth Sleepiness Scale for Children and Adolescents (ESS-CHAD) in pediatric patients with narcolepsy.

PATIENTS AND METHODS: Face-to-face concept elicitation and cognitive interviews were conducted with children (7-9 years; n=13) and adolescents (10-17 years; n=16) who have narcolepsy with cataplexy, and their parents/caregivers.

RESULTS: Similarities and differences were noted between narcolepsy concepts described by children and their parents/caregivers, suggesting some different but complementary perspectives; parents may not recognize cataplexy symptoms/triggers as well as children, but parents have greater recognition of the circumstances of falling asleep. Cataplexy diary modifications included changes in definitions and examples of cataplexy, using child-friendly terminology, adding a quantitative question to determine daily frequency, and standardizing the questionnaire for evening administration with self-completion by the child. Modifications were made to ESS-CHAD for child-friendly wording and to ensure that items reflect activities (eating, watching TV/video) and environments (school, bus/car transport) in which children are likely to participate. Two ESS-CHAD versions were proposed: one with a 1-month recall period, for general use, and the other with a recall period of "since your last study visit," for research, which could be shorter or longer than 1 month (as short as 1 week).

CONCLUSION: The cataplexy diary and ESS-CHAD were modified for the assessment of children and adolescents. Further psychometric validation is recommended. These measures are being used in a Phase III, placebo-controlled clinical trial of sodium oxybate in children and adolescents with narcolepsy.

Keywords: adolescents; assessment; cataplexy; children; narcolepsy; sleepiness

Conflict of interest statement

Disclosure Dr Y Grace Wang is an employee of Jazz Pharmaceuticals, who in the course of this employment has received stock options exercisable for, and other stock awards of, ordinary shares of Jazz P

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