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  • 标题:Assessing narcolepsy with cataplexy in children and adolescents: development of a cataplexy diary and the ESS-CHAD
  • 本地全文:下载
  • 作者:Y Grace Wang ; Khadra Benmedjahed ; Jérémy Lambert
  • 期刊名称:Nature and Science of Sleep
  • 印刷版ISSN:1179-1608
  • 电子版ISSN:1179-1608
  • 出版年度:2017
  • 卷号:9
  • 页码:201-211
  • DOI:10.2147/NSS.S140143
  • 语种:English
  • 出版社:Dove Medical Press Ltd
  • 摘要: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.
  • 关键词:narcolepsy; cataplexy; sleepiness; assessment; children; adolescents
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