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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.
Klassen, Anne F; Riff, Karen Wy Wong; Longmire, Natasha M; Albert, Asteria; Allen, Gregory C; Aydin, Mustafa Asim; Baker, Stephen B; Cano, Stefan J; Chan, Andrew J; Courtemanche, Douglas J; Dreise, Marieke M; Goldstein, Jesse A; Goodacre, Timothy E E; Harman, Karen E; Munill, Montserrat; Mahony, Aisling O; Aguilera, Mirta Palomares; Peterson, Petra; Pusic, Andrea L; Slator, Rona; Stiernman, Mia; Tsangaris, Elena; Tholpady, Sunil S; Vargas, Federico; Forrest, Christopher R.
Afiliação
  • Klassen AF; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Riff KWW; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Longmire NM; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Albert A; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Allen GC; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Aydin MA; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Baker SB; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Cano SJ; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Chan AJ; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Courtemanche DJ; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Dreise MM; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Goldstein JA; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Goodacre TEE; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Harman KE; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Munill M; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Mahony AO; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Aguilera MP; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Peterson P; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Pusic AL; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Slator R; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Stiernman M; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Tsangaris E; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Tholpady SS; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Vargas F; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
  • Forrest CR; Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ont.; Department of Pediatrics (Longmire), McMaster University, Hamilton, Ont.; Depa
CMAJ ; 190(15): E455-E462, 2018 04 16.
Article em En | MEDLINE | ID: mdl-29661814
ABSTRACT

BACKGROUND:

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 palate.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Fenda Labial / Fissura Palatina / Satisfação do Paciente / Avaliação de Resultados em Cuidados de Saúde / Benchmarking Tipo de estudo: Clinical_trials / Diagnostic_studies / Prognostic_studies Limite: Adolescent / Adult / Child / Female / Humans / Male País/Região como assunto: America do norte / Europa Idioma: En Revista: CMAJ Assunto da revista: MEDICINA Ano de publicação: 2018 Tipo de documento: Article
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Fenda Labial / Fissura Palatina / Satisfação do Paciente / Avaliação de Resultados em Cuidados de Saúde / Benchmarking Tipo de estudo: Clinical_trials / Diagnostic_studies / Prognostic_studies Limite: Adolescent / Adult / Child / Female / Humans / Male País/Região como assunto: America do norte / Europa Idioma: En Revista: CMAJ Assunto da revista: MEDICINA Ano de publicação: 2018 Tipo de documento: Article