Assessing narcolepsy with cataplexy in children and adolescents: development of a cataplexy diary and the ESS-CHAD
Identifieur interne : 004D77 ( Ncbi/Checkpoint ); précédent : 004D76; suivant : 004D78Assessing narcolepsy with cataplexy in children and adolescents: development of a cataplexy diary and the ESS-CHAD
Auteurs : Y Grace Wang [États-Unis] ; Khadra Benmedjahed [France] ; Jérémy Lambert [France] ; Christopher J. Evans [États-Unis] ; Steve Hwang [États-Unis] ; Jed Black [États-Unis] ; Murray W. Johns [Australie]Source :
- Nature and Science of Sleep [ 1179-1608 ] ; 2017.
Abstract
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.
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.
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).
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.
Url:
DOI: 10.2147/NSS.S140143
PubMed: 28860883
PubMed Central: 5565379
Affiliations:
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<front><div type="abstract" xml:lang="en"><sec><title>Objective</title>
<p>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.</p>
</sec>
<sec><title>Patients and methods</title>
<p>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.</p>
</sec>
<sec><title>Results</title>
<p>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).</p>
</sec>
<sec><title>Conclusion</title>
<p>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.</p>
</sec>
</div>
</front>
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<author><name sortKey="Junghaenel, Du" uniqKey="Junghaenel D">DU Junghaenel</name>
</author>
<author><name sortKey="Schneider, S" uniqKey="Schneider S">S Schneider</name>
</author>
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<author><name sortKey="O Onnor, J" uniqKey="O Onnor J">J O’Connor</name>
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<region><li>Auvergne-Rhône-Alpes</li>
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<name sortKey="Evans, Christopher J" sort="Evans, Christopher J" uniqKey="Evans C" first="Christopher J" last="Evans">Christopher J. Evans</name>
<name sortKey="Hwang, Steve" sort="Hwang, Steve" uniqKey="Hwang S" first="Steve" last="Hwang">Steve Hwang</name>
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<country name="France"><region name="Auvergne-Rhône-Alpes"><name sortKey="Benmedjahed, Khadra" sort="Benmedjahed, Khadra" uniqKey="Benmedjahed K" first="Khadra" last="Benmedjahed">Khadra Benmedjahed</name>
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