CLEFT-Q is designed to provide clinicians and researchers with the ability to tailor their own version of the questionnaire to suit their needs.
The CLEFT-Q is for anyone with cleft lip and/or palate aged 8 to 29 years. The CLEFT-Q has an eating/drinking checklist and 12 scales that measure 3 overarching domains of Facial Appearance, Facial Function, and Quality of Life.
Advancing Knowledge &
Improving Health Outcomes
CLEFT-Q was field-tested with 2434 patients with cleft lip and/or palate at 30 hospitals in 12 countries.
Can be used in international clinical trials of craniofacial treatments.
Included in ICHOM Standard Sets for craniofacial conditions to enable hospitals around the world to compare outcomes.
Designed using a modern psychometric approach to facilitate use in patient care.
Basic Scale Structure
The CLEFT-Q is designed to provide clinicians and researchers with the ability to tailor their own version of the questionnaire to suit their needs. The CLEFT-Q measures 3 overarching domains: Appearance, Facial Function, and Quality of Life. The conceptual framework shown below was developed from qualitative interviews with 138 patients from 6 countries, 69 cognitive interviews, and careful examination of the research literature and engagement with 44 clinical experts. The CLEFT-Q was then field-tested in an international sample of 2434 patients in 12 countries.
The CLEFT-Q includes 7 appearance scales that measures aspects of appearance that are addressed by cleft-specific treatments including the face overall, lips, jaw, nose, nostrils, teeth and cleft lip scar.
The CLEFT-Q includes a speech scale that asks about problems with speaking such as having trouble with some words or sentences and having to speak slowly or to repeat oneself. The CLEFT-Q also includes a checklist to measure eating and drinking problems, such as having food get stuck in a hole in the mouth.
QUALITY OF LIFE
The CLEFT-Q includes 4 quality of life scales that measure psychological, social and school function. There is also a speech distress scale that measures feelings (e.g., embarrassment, frustration, being upset) associated with a speech problem.
Cleft Lip Scar
Eating / Drinking
QUALITY OF LIFE
Select a section to see list of relevant publications
Leveraging PRO Data to Inform Oncology Clinical Decision Making. Stefan Cano, Modus Outcomes’ CSO and co-developer of the Q-Portfolio is not sitting still! @DrStefanCano co-authored a paper describing the development of a Head & Neck Cancer Module for the FACE-Q.
@ElizahoyleOwen @eurordis If you're interested in more #PROMS @ISOQOL provide a great Introduction to PROMS course @ElizahoyleOwen Also @anneklassen @McMasterU & @Q_Portfolio doing some great work on #PROMS in the field of plastic surgery - including many patients with rare diseases
@ElizahoyleOwen @shirley_bracken @eurordis @ISOQOL @anneklassen @McMasterU @Q_Portfolio Agree. ISOQOL is THE meeting for anyone interesting in using, developing, and validating patient-centered measures. The annual scientific meeting will be in San Diego in mid October. I’ve connected with fantastic colleagues all over the world thru ISOQOL.