Abstract
The CLEFT-Q is a new patient-reported outcome instrument designed to measure outcomes that matter to patients. The aim of this qualitative study was to establish content validity of the CLEFT-Q in patients who differ by age and culture. Patients aged between 6 and 29 years were recruited from plastic surgery clinics in Canada, India, Ireland, the Philippines, the Netherlands and the United States. Healthcare providers and other experts participated in a focus group or provided individual feedback. Input was sought on all aspects of the CLEFT-Q (item wording, instructions, and response options), and to identify missing content. Patient interviews and expert feedback took place between September 2013 and September 2014. Sixty-nine patients and 44 experts participated. The first draft of the CLEFT-Q consisted of 163 items measuring 12 constructs. The first round of feedback identified 92 items that required revision. In total, 3 rounds of interviews, and the involvement of an artist to create pictures for 17 items, were needed to establish content validity. At the conclusion of cognitive interviews, the CLEFT-Q consisted of 13 scales (total 171 items) that measure appearance, health-related quality of life, and facial function. Th...Continue Reading
References
Apr 1, 1995·Southern Medical Journal·S K DasH H Cohly
Jul 24, 1997·The New England Journal of Medicine·B D Weiss, C Coyne
Jun 21, 2002·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Neil AaronsonRuth E Stein
Aug 6, 2002·Journal of Dental Research·A JokovicG Guyatt
Jun 21, 2003·Journal of Public Health Dentistry·Aleksandra JokovicGordon Guyatt
Jan 13, 2005·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Gunvor SembWilliam C Shaw
Apr 5, 2005·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Diane WildUNKNOWN ISPOR Task Force for Translation and Cultural Adaptation
Jan 21, 2006·Health and Quality of Life Outcomes·Aleksandra JokovicGordan Guyatt
May 10, 2006·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Alexandra JohnAlison Williams
Jul 19, 2006·Archives of Otolaryngology--head & Neck Surgery·Mark E BoseleyChristopher J Hartnick
Jan 5, 2007·Health and Quality of Life Outcomes·James W VarniTasha M Burwinkle
Mar 9, 2007·Palliative Medicine·Fliss E M MurtaghIrene J Higginson
Aug 31, 2007·Community Dentistry and Oral Epidemiology·Hillary L BroderGeorge J Cisneros
Aug 31, 2007·Community Dentistry and Oral Epidemiology·Hillary L Broder, Maureen Wilson-Genderson
Sep 1, 2007·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Donald L PatrickChristopher R Thomas
Feb 27, 2008·Clinics in Plastic Surgery·Anne F KlassenAndrea L Pusic
Nov 20, 2008·Archives of Facial Plastic Surgery·Travis T TollefsonJonathan M Sykes
Mar 26, 2009·Plastic and Reconstructive Surgery·Stefan J CanoAndrea L Pusic
Sep 15, 2009·Lancet·Peter A MosseyWilliam C Shaw
Sep 29, 2009·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Meryl BrodTorsten L Christensen
Aug 19, 2010·Expert Review of Pharmacoeconomics & Outcomes Research·Katherine B BevansChristopher B Forrest
Jan 12, 2011·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Ross E LongWilliam Shaw
Oct 7, 2011·Clinical Pharmacology and Therapeutics·N E RothrockD Cella
Oct 28, 2011·Plastic and Reconstructive Surgery·Donna A EcksteinPeter J Taub
Nov 29, 2011·Journal of Plastic, Reconstructive & Aesthetic Surgery : JPRAS·Anne F KlassenTim Goodacre
Dec 14, 2011·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Donald L PatrickLena Ring
Dec 14, 2011·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Donald L PatrickLena Ring
Jul 17, 2012·Health and Quality of Life Outcomes·Jyoti KhadkaKonrad Pesudovs
Jan 13, 2017·BMJ Open·Karen W Y Wong RiffAnne F Klassen
Citations
Nov 29, 2017·Health and Quality of Life Outcomes·Elena TsangarisAnne F Klassen
Feb 28, 2019·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Frans J MulderJ P W Don Griot
Mar 8, 2019·The Journal of Craniofacial Surgery·Thainara Alves CrepaldiThais Marchini Oliveira
Jun 28, 2019·Plastic and Reconstructive Surgery·Karen W Y Wong RiffAnne F Klassen
Jan 28, 2020·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Alexis RothermelThomas Samson
Mar 17, 2020·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Michelle AcumJudith Young
Feb 13, 2020·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Anne F KlassenKaren W Y Wong Riff
Oct 17, 2018·Plastic and Reconstructive Surgery. Global Open·Isabelle CitronCarolyn R Rogers-Vizena
Jan 29, 2019·Plastic and Reconstructive Surgery·Diana S JodehS Alex Rottgers
Nov 28, 2019·Plastic and Reconstructive Surgery. Global Open·Karen Y ChungDavid Fisher
May 10, 2020·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Molly PinckstonMatthew T Hotton
Jul 3, 2020·Journal of Reconstructive Microsurgery·Lily R MundyMark J Gage
Oct 14, 2020·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Mia StiernmanMagnus Becker
Dec 4, 2020·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Eleonore E BreuningDouglas J Courtemanche
Feb 28, 2021·Journal of Plastic, Reconstructive & Aesthetic Surgery : JPRAS·Anne F KlassenStefan Cano
Mar 2, 2021·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Inge AponSarah L Versnel
Mar 12, 2021·The Journal of Craniofacial Surgery·Ella GibsonKamlesh B Patel
Feb 5, 2021·Orthodontics & Craniofacial Research·Ali TassiAnne F Klassen
Mar 18, 2021·Journal of Plastic Surgery and Hand Surgery·S Pauliina HomsyPatrik A Lassus
Mar 30, 2021·Plastic and Reconstructive Surgery·Anna R Carlson, Jesse A Taylor
Jun 27, 2021·Journal of Plastic, Reconstructive & Aesthetic Surgery : JPRAS·Anne F KlassenStefan Cano
Jul 19, 2021·Journal of Plastic, Reconstructive & Aesthetic Surgery : JPRAS·Anne F KlassenStefan Cano
Nov 7, 2020·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Rakhshan KamranAnne F Klassen
Dec 24, 2020·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Alyssa FritzS Alex Rottgers
Nov 21, 2021·BMC Oral Health·Shabnam AjamiMaryam Ajami
Dec 18, 2021·The Cleft Palate-craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association·Anna MiroshnychenkoAnne Klassen