• Anne F Klassen, Karen Wy Wong Riff, Natasha M Longmire, Asteria Albert, Gregory C Allen, Mustafa Asim Aydin, Stephen B Baker, Stefan J Cano, Andrew J Chan, Douglas J Courtemanche, Marieke M Dreise, Jesse A Goldstein, Goodacre Timothy E E TEE Department of Pediatrics (Klassen), McMaster University, Hamilton, Ont.; Division of Plastic and Reconstructive Surgery (Wong Riff), Department o, Karen E Harman, Montserrat Munill, Aisling O Mahony, Mirta Palomares Aguilera, Petra Peterson, Andrea L Pusic, Rona Slator, Mia Stiernman, Elena Tsangaris, Sunil S Tholpady, Federico Vargas, and Christopher R Forrest.
• 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.; Department of Pediatric Surgery (Albert), Hospital Sant Joan de Déu, Universitat de Barcelona, Spain; Department of Otolaryngology - Head & Neck Surgery (Allen), University of Colorado School of Medicine, Aurora, Colo.; Department of Plastic Reconstructive and Aesthetic Surgery (Aydin), School of Medicine, Suleyman Demirel University, Isparta Turkey; Inova Children's Hospital (Baker), Falls Church, Va.; Department of Plastic Surgery (Baker), MedStar Georgetown University Hospital, Washington, DC; Modus Outcomes (Cano), Letchworth Garden City, UK; Department of Plastic Surgery (Chan), Flinders Medical Centre, Bedford Park, South Australia; Division of Plastic Surgery, Department of Surgery (Courtemanche), University of British Columbia; BC Children's Hospital, Vancouver, BC; Department of Plastic Surgery (Dreise), University Medical Centre Groningen, University of Groningen, The Netherlands; Department of Plastic Surgery (Goldstein), University of Pittsburgh Medical Center, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, Pa.; Spires Cleft Centre (Goodacre), Oxford University Hospitals NHS Foundation Trust, Oxford, UK; Department of Pediatrics (Harman), McMaster University, Ron Joyce Children's Health Centre, Hamilton, Ont.; Maxillofacial Surgery Department (Munill), Hospital Vall d'Hebron, Barcelona, Spain; National Maxillofacial Unit (Mahony), St James's Hospital, Dublin, Ireland; Fundación Gantz, departamento de Fonoaudiología (Aguilera), El Lazo, Pudahuel, Chile; Department of Reconstructive Plastic Surgery (Peterson), Karolinska University Hospital, Stockholm, Sweden; Plastic and Reconstructive Surgery (Pusic), Memorial Sloan-Kettering Cancer Center, New York, NY; West Midlands Cleft Service (Slator), Birmingham Children's Hospital, Birmingham, UK; Department of Clinical Sciences in Malmö (Stiernman), Lund University, Lund, Sweden; Department of Health Research Methods, Evidence, and Impact (Tsangaris), McMaster University, Hamilton, Ont.; Indiana University School of Medicine (Tholpady), R.L. Roudebush Veterans Affairs Medical Center, Indianapolis, Ind.; Division of Plastic Surgery Universidad el Bosque (Vargas), Fundación Operación Sonrisa Colombia, Bogotá, Colombia; The Centre for Craniofacial Care and Research (Forrest), The Hospital for Sick Children, Toronto, Ont. aklass@mcmaster.ca.
• CMAJ. 2018 Apr 16; 190 (15): E455-E462.

BackgroundPatients 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.MethodsData 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.ResultsAnalysis 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.InterpretationThe 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.© 2018 Joule Inc. or its licensors.

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