Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries

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dc.contributor.authorKlassen, Anne
dc.contributor.authorWong Riff, Karen WY
dc.contributor.authorLongmire, Natasha M.
dc.contributor.authorAlbert, Asteria
dc.contributor.authorAllen, Gregory
dc.contributor.authorAYDIN, MUSTAFA ASIM
dc.contributor.authorBaker, Stephen
dc.contributor.authorCano, Stefan
dc.contributor.authorChan, Andrew
dc.contributor.authorCourtemanche, Douglas
dc.contributor.authorDreise, Marieke M.
dc.contributor.authorGoldstein, Jesse
dc.contributor.authorHarman, Karen E.
dc.contributor.authorMunill, Montserrat
dc.contributor.authorMahony, Aisling O.
dc.contributor.authorPalomares Aguilera, Mirta
dc.contributor.authorPeterson, Petra
dc.contributor.authorPusic, Andrea
dc.contributor.authorSlator, Rona
dc.contributor.authorStiernman, Mia
dc.contributor.authorTsangaris, Elena
dc.contributor.authorTholpady, Sunil S.
dc.contributor.authorForrest, Christopher
dc.contributor.authorVargas, Federico
dc.date.accessioned2020-04-24T19:12:02Z
dc.date.available2020-04-24T19:12:02Z
dc.date.issued2018
dc.description.abstractenglishBackground: Patients with cleft lip and/or palate can undergo numerous procedures to improve appearance, speech, dentition and hearing. We developed a cleft-specific patient-reported outcome instrument to facilitate rigorous international measurement and benchmarking. Methods: Data were collected from patients aged 8–29 years with cleft lip and/or palate at 30 hospitals in 12 countries between October 2014 and November 2016. Rasch measurement theory analysis was used to refine the scales and to examine reliability and validity. Normative CLEFT-Q values were computed for age, sex and cleft type. Results: Analysis led to the refinement of an eating and drinking checklist and 12 scales measuring appearance (of the face, nose, nostrils, teeth, lips, jaws and cleft lip scar), health-related quality of life (psychological, social, school, speech distress) and speech function. All scales met the requirements of the Rasch model. Analysis to explore differential item functioning by age, sex and country provided evidence to support the use of a common scoring algorithm for each scale for international use. Lower (worse) scores on CLEFT-Q scales were associated with having a speech problem, being unhappy with facial appearance, and needing future cleft-related treatments, providing evidence of construct validity. Normative values for age, sex and cleft type showed poorer outcomes associated with older age, female sex and having a visible cleft. Interpretation: The CLEFT-Q represents a rigorously developed instrument that can be used internationally to collect and compare evidence-based outcomes data from patients aged 8–29 years of age with cleft lip and/or peng
dc.format.mimetypeapplication/pdf
dc.identifier.doihttps://doi.org/10.1503/cmaj.170289
dc.identifier.instnameinstname:Universidad El Bosquespa
dc.identifier.issn0820-3946
dc.identifier.reponamereponame:Repositorio Institucional Universidad El Bosquespa
dc.identifier.repourlrepourl:https://repositorio.unbosque.edu.co
dc.identifier.urihttps://hdl.handle.net/20.500.12495/2380
dc.language.isoeng
dc.publisherCanadian Medical Association/Association Medical Canadiennespa
dc.publisher.journalCMAJspa
dc.relation.ispartofseriesCMAJ, 0820-3946, Vol. 190, Nro. 15, 2018, p. E455-E462spa
dc.relation.urihttps://www.cmaj.ca/content/190/15/E455
dc.rights.accessrightsinfo:eu-repo/semantics/openAccess
dc.rights.accessrightshttps://purl.org/coar/access_right/c_abf187
dc.rights.creativecommons2018
dc.rights.localAcceso cerradospa
dc.subjectLabio leporinospa
dc.subjectFisura del paladarspa
dc.subjectPsicología clínicaspa
dc.subject.decsTrastornos del hablaspa
dc.subject.decsGlotisspa
dc.subject.decsRecolección de datosspa
dc.subject.keywordsCleft lipspa
dc.subject.keywordsCleft palatespa
dc.subject.keywordsPsychology, clinicalspa
dc.titlePsychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countriesspa
dc.title.translatedPsychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries
dc.typearticlespa
dc.type.hasversioninfo:eu-repo/semantics/publishedVersion
dc.type.localartículospa

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