Assessing sleepiness and cataplexy in children and adolescents with narcolepsy: a review of current patient-reported measures.
Identifieur interne : 000E46 ( PubMed/Curation ); précédent : 000E45; suivant : 000E47Assessing sleepiness and cataplexy in children and adolescents with narcolepsy: a review of current patient-reported measures.
Auteurs : Khadra Benmedjahed [France] ; Y Grace Wang [États-Unis] ; Jérémy Lambert [France] ; Christopher Evans [États-Unis] ; Steve Hwang [États-Unis] ; Jed Black [États-Unis] ; Murray W. Johns [Australie]Source :
- Sleep medicine [ 1878-5506 ] ; 2017.
Abstract
The objective of this study was to review patient-reported outcome measures assessing excessive daytime sleepiness (EDS) or cataplexy in children or adolescents to determine their usefulness and limitations in pediatric narcolepsy assessment.
DOI: 10.1016/j.sleep.2016.12.020
PubMed: 28366326
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Electronic address: kbenmedjahed@mapigroup.com.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Mapi, Lyon</wicri:regionArea></affiliation></author><author><name sortKey="Wang, Y Grace" sort="Wang, Y Grace" uniqKey="Wang Y" first="Y Grace" last="Wang">Y Grace Wang</name><affiliation wicri:level="1"><nlm:affiliation>Jazz Pharmaceuticals, Palo Alto, CA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Jazz Pharmaceuticals, Palo Alto, CA</wicri:regionArea></affiliation></author><author><name sortKey="Lambert, Jeremy" sort="Lambert, Jeremy" uniqKey="Lambert J" first="Jérémy" last="Lambert">Jérémy Lambert</name><affiliation wicri:level="1"><nlm:affiliation>Mapi, Lyon, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Mapi, Lyon</wicri:regionArea></affiliation></author><author><name sortKey="Evans, Christopher" sort="Evans, Christopher" uniqKey="Evans C" first="Christopher" last="Evans">Christopher Evans</name><affiliation wicri:level="1"><nlm:affiliation>Endpoint Outcomes, Boston, MA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Endpoint Outcomes, Boston, MA</wicri:regionArea></affiliation></author><author><name sortKey="Hwang, Steve" sort="Hwang, Steve" uniqKey="Hwang S" first="Steve" last="Hwang">Steve Hwang</name><affiliation wicri:level="1"><nlm:affiliation>Endpoint Outcomes, Boston, MA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Endpoint Outcomes, Boston, MA</wicri:regionArea></affiliation></author><author><name sortKey="Black, Jed" sort="Black, Jed" uniqKey="Black J" first="Jed" last="Black">Jed Black</name><affiliation wicri:level="1"><nlm:affiliation>Jazz Pharmaceuticals, Palo Alto, CA, USA; Stanford Sleep Medicine Center, Redwood City, CA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Jazz Pharmaceuticals, Palo Alto, CA, USA; Stanford Sleep Medicine Center, Redwood City, CA</wicri:regionArea></affiliation></author><author><name sortKey="Johns, Murray W" sort="Johns, Murray W" uniqKey="Johns M" first="Murray W" last="Johns">Murray W. Johns</name><affiliation wicri:level="1"><nlm:affiliation>Epworth Sleep Centre, Melbourne, VIC, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Epworth Sleep Centre, Melbourne, VIC</wicri:regionArea></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2017">2017</date><idno type="RBID">pubmed:28366326</idno><idno type="pmid">28366326</idno><idno type="doi">10.1016/j.sleep.2016.12.020</idno><idno type="wicri:Area/PubMed/Corpus">000E49</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">000E49</idno><idno type="wicri:Area/PubMed/Curation">000E46</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Curation">000E46</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Assessing sleepiness and cataplexy in children and adolescents with narcolepsy: a review of current patient-reported measures.</title><author><name sortKey="Benmedjahed, Khadra" sort="Benmedjahed, Khadra" uniqKey="Benmedjahed K" first="Khadra" last="Benmedjahed">Khadra Benmedjahed</name><affiliation wicri:level="1"><nlm:affiliation>Mapi, Lyon, France. Electronic address: kbenmedjahed@mapigroup.com.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Mapi, Lyon</wicri:regionArea></affiliation></author><author><name sortKey="Wang, Y Grace" sort="Wang, Y Grace" uniqKey="Wang Y" first="Y Grace" last="Wang">Y Grace Wang</name><affiliation wicri:level="1"><nlm:affiliation>Jazz Pharmaceuticals, Palo Alto, CA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Jazz Pharmaceuticals, Palo Alto, CA</wicri:regionArea></affiliation></author><author><name sortKey="Lambert, Jeremy" sort="Lambert, Jeremy" uniqKey="Lambert J" first="Jérémy" last="Lambert">Jérémy Lambert</name><affiliation wicri:level="1"><nlm:affiliation>Mapi, Lyon, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Mapi, Lyon</wicri:regionArea></affiliation></author><author><name sortKey="Evans, Christopher" sort="Evans, Christopher" uniqKey="Evans C" first="Christopher" last="Evans">Christopher Evans</name><affiliation wicri:level="1"><nlm:affiliation>Endpoint Outcomes, Boston, MA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Endpoint Outcomes, Boston, MA</wicri:regionArea></affiliation></author><author><name sortKey="Hwang, Steve" sort="Hwang, Steve" uniqKey="Hwang S" first="Steve" last="Hwang">Steve Hwang</name><affiliation wicri:level="1"><nlm:affiliation>Endpoint Outcomes, Boston, MA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Endpoint Outcomes, Boston, MA</wicri:regionArea></affiliation></author><author><name sortKey="Black, Jed" sort="Black, Jed" uniqKey="Black J" first="Jed" last="Black">Jed Black</name><affiliation wicri:level="1"><nlm:affiliation>Jazz Pharmaceuticals, Palo Alto, CA, USA; Stanford Sleep Medicine Center, Redwood City, CA, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Jazz Pharmaceuticals, Palo Alto, CA, USA; Stanford Sleep Medicine Center, Redwood City, CA</wicri:regionArea></affiliation></author><author><name sortKey="Johns, Murray W" sort="Johns, Murray W" uniqKey="Johns M" first="Murray W" last="Johns">Murray W. Johns</name><affiliation wicri:level="1"><nlm:affiliation>Epworth Sleep Centre, Melbourne, VIC, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Epworth Sleep Centre, Melbourne, VIC</wicri:regionArea></affiliation></author></analytic><series><title level="j">Sleep medicine</title><idno type="eISSN">1878-5506</idno><imprint><date when="2017" type="published">2017</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">The objective of this study was to review patient-reported outcome measures assessing excessive daytime sleepiness (EDS) or cataplexy in children or adolescents to determine their usefulness and limitations in pediatric narcolepsy assessment.</div></front></TEI><pubmed><MedlineCitation Status="In-Process" Owner="NLM"><PMID Version="1">28366326</PMID><DateCreated><Year>2017</Year><Month>04</Month><Day>03</Day></DateCreated><DateRevised><Year>2017</Year><Month>04</Month><Day>03</Day></DateRevised><Article PubModel="Print-Electronic"><Journal><ISSN IssnType="Electronic">1878-5506</ISSN><JournalIssue CitedMedium="Internet"><Volume>32</Volume><PubDate><Year>2017</Year><Month>Apr</Month></PubDate></JournalIssue><Title>Sleep medicine</Title><ISOAbbreviation>Sleep Med.</ISOAbbreviation></Journal><ArticleTitle>Assessing sleepiness and cataplexy in children and adolescents with narcolepsy: a review of current patient-reported measures.</ArticleTitle><Pagination><MedlinePgn>143-149</MedlinePgn></Pagination><ELocationID EIdType="pii" ValidYN="Y">S1389-9457(17)30012-6</ELocationID><ELocationID EIdType="doi" ValidYN="Y">10.1016/j.sleep.2016.12.020</ELocationID><Abstract><AbstractText Label="OBJECTIVE" NlmCategory="OBJECTIVE">The objective of this study was to review patient-reported outcome measures assessing excessive daytime sleepiness (EDS) or cataplexy in children or adolescents to determine their usefulness and limitations in pediatric narcolepsy assessment.</AbstractText><AbstractText Label="METHODS" NlmCategory="METHODS">Searches were performed in Embase and Medline for pediatric measures of EDS and cataplexy that are either patient- or proxy-reported, and searches of http://www.clinicaltrials.gov/ were conducted for studies in narcolepsy that included at least one patient-reported measure. Further review was performed if sleepiness questionnaires (child or proxy-reported), sleep questionnaires that may contain sleepiness questions, proxy-reported child behavior questionnaires, or information on cataplexy measures were mentioned.</AbstractText><AbstractText Label="RESULTS" NlmCategory="RESULTS">All self-reported cataplexy questionnaires from among 27 citations were study-specific diaries and were not identifiable as a recognized validated questionnaire. For EDS, 118 of 401 abstracts were further reviewed and the names of 21 questionnaires identified, of which eight questionnaires did not return additional citations of their validation. The Epworth Sleepiness Scale (ESS) or a modified version was the most frequently used measure of EDS. Although all measures were associated with limitations for use in the pediatric population, the ESS has been successfully used in adolescents and was deemed readily amenable to further modification for children.</AbstractText><AbstractText Label="CONCLUSIONS" NlmCategory="CONCLUSIONS">There remains a dearth of validated measures for assessing EDS and cataplexy in children and adolescents with narcolepsy. The need for these measures may be filled by modification or adaptation of existing adult measures; a daily cataplexy diary and the ESS may be readily modified to make them child-friendly with regard to wording and settings, but should still undergo psychometric validation.</AbstractText><CopyrightInformation>Copyright © 2017 The Authors. Published by Elsevier B.V. All rights reserved.</CopyrightInformation></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Benmedjahed</LastName><ForeName>Khadra</ForeName><Initials>K</Initials><AffiliationInfo><Affiliation>Mapi, Lyon, France. Electronic address: kbenmedjahed@mapigroup.com.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Wang</LastName><ForeName>Y Grace</ForeName><Initials>YG</Initials><AffiliationInfo><Affiliation>Jazz Pharmaceuticals, Palo Alto, CA, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Lambert</LastName><ForeName>Jérémy</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Mapi, Lyon, France.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Evans</LastName><ForeName>Christopher</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Endpoint Outcomes, Boston, MA, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hwang</LastName><ForeName>Steve</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>Endpoint Outcomes, Boston, MA, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Black</LastName><ForeName>Jed</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Jazz Pharmaceuticals, Palo Alto, CA, USA; Stanford Sleep Medicine Center, Redwood City, CA, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Johns</LastName><ForeName>Murray W</ForeName><Initials>MW</Initials><AffiliationInfo><Affiliation>Epworth Sleep Centre, Melbourne, VIC, Australia.</Affiliation></AffiliationInfo></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType><PublicationType UI="D016454">Review</PublicationType></PublicationTypeList><ArticleDate DateType="Electronic"><Year>2017</Year><Month>01</Month><Day>20</Day></ArticleDate></Article><MedlineJournalInfo><Country>Netherlands</Country><MedlineTA>Sleep Med</MedlineTA><NlmUniqueID>100898759</NlmUniqueID><ISSNLinking>1389-9457</ISSNLinking></MedlineJournalInfo><KeywordList Owner="NOTNLM"><Keyword MajorTopicYN="N">Adolescents</Keyword><Keyword MajorTopicYN="N">Assessment</Keyword><Keyword MajorTopicYN="N">Cataplexy</Keyword><Keyword MajorTopicYN="N">Children</Keyword><Keyword MajorTopicYN="N">Narcolepsy</Keyword><Keyword MajorTopicYN="N">Sleepiness</Keyword></KeywordList></MedlineCitation><PubmedData><History><PubMedPubDate PubStatus="received"><Year>2016</Year><Month>05</Month><Day>27</Day></PubMedPubDate><PubMedPubDate PubStatus="revised"><Year>2016</Year><Month>12</Month><Day>23</Day></PubMedPubDate><PubMedPubDate PubStatus="accepted"><Year>2016</Year><Month>12</Month><Day>26</Day></PubMedPubDate><PubMedPubDate PubStatus="entrez"><Year>2017</Year><Month>4</Month><Day>4</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="pubmed"><Year>2017</Year><Month>4</Month><Day>4</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="medline"><Year>2017</Year><Month>4</Month><Day>4</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate></History><PublicationStatus>ppublish</PublicationStatus><ArticleIdList><ArticleId IdType="pubmed">28366326</ArticleId><ArticleId IdType="pii">S1389-9457(17)30012-6</ArticleId><ArticleId IdType="doi">10.1016/j.sleep.2016.12.020</ArticleId></ArticleIdList></PubmedData></pubmed></record>Pour manipuler ce document sous Unix (Dilib)
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