Research
CLEFT-Q was field-tested with 2434 patients with cleft lip and/or palate at 30 hospitals in 12 countries.
FREE TO NON-PROFIT USERS
Easily available to clinicians and researchers
SHORT INDEPENDENTLY FUNCTIONING SCALES
Choice of scales customizable for different needs
MEASURING WHAT MATTERS TO PATIENTS
Appearance, quality of life, adverse effects
USED WIDELY AROUND THE WORLD
Available in multiple languages
STRONG PSYCHOMETRIC PERFORMANCE
Rigorously developed and sensitive to clinical change
CUSTOMIZABLE FOR DIFFERENT NEEDS
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
Industry
Can be used in international clinical trials of craniofacial treatments.
Benchmarking
Included in ICHOM Standard Sets for craniofacial conditions to enable hospitals around the world to compare outcomes.
Patient Care
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.
APPEARANCE
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.
FACIAL FUNCTION
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-Q
Publications
Select a section to see list of relevant publications
CLEFT-Q DEVELOPMENT AND VALIDATION PUBLICATIONS
- Klassen AF, Riff KWW, Longmire NM, Albert A, Allen GC, Aydin MA, Baker SB, Cano SJ, Chan AJ, Courtemanche DJ, Dreise MM, Goldstein JA, Goodacre TEE, Harman KE, Munill M, Mahony AO, Aguilera MP, Peterson P, Pusic AL, Slator R, Stiernman M, Tsangaris E, Tholpady SS, Vargas F, Forrest CR. 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. CMAJ. 2018 Apr 16;190(15):E455-E462.
- Wong Riff KWY, Tsangaris E, Goodacre TEE, Forrest CR, Lawson J, Pusic AL, Klassen AF. What Matters to Patients With Cleft Lip and/or Palate: An International Qualitative Study Informing the Development of the CLEFT-Q. Cleft Palate Craniofac J. 2018 Mar;55(3):442-450. Epub 2017 Dec 14.
- Voineskos SH, Nelson JA, Klassen AF, Pusic AL. Measuring Patient-Reported Outcomes: Key Metrics in Reconstructive Surgery. Annu Rev Med. 2018 Jan 29;69:467-479.
- Tsangaris E, Riff KWYW, Vargas F, Aguilera MP, Alarcón MM, Cazalla AA, Thabane L, Thoma A, Klassen AF. Translation and cultural adaptation of the CLEFT-Q for use in Colombia, Chile, and Spain. Health Qual Life Outcomes. 2017 Nov 28;15(1):228.
- Tsangaris E, Wong Riff KWY, Goodacre T, Forrest CR, Dreise M, Sykes J, de Chalain T, Harman K, O’Mahony A, Pusic AL, Thabane L, Thoma A, Klassen AF. Establishing Content Validity of the CLEFT-Q: A New Patient-reported Outcome Instrument for Cleft Lip/Palate. Plast Reconstr Surg Glob Open. 2017 Apr 25;5(4):e1305.
- Wong Riff KW, Tsangaris E, Goodacre T, Forrest CR, Pusic AL, Cano SJ, Klassen AF. International multiphase mixed methods study protocol to develop a cross-cultural patient-reported outcome instrument for children and young adults with cleft lip and/or palate (CLEFT-Q). BMJ Open. 2017 Jan 11;7(1):e015467.
- Klassen AF, Tsangaris E, Forrest CR, Wong KW, Pusic AL, Cano SJ, Syed I, Dua M, Kainth S, Johnson J, Goodacre T. Quality of life of children treated for cleft lip and/or palate: a systematic review. J Plast Reconstr Aesthet Surg. 2012 May;65(5):547-57.
- Wong KW, Forrest CR, Goodacre TE, Klassen AF. Measuring outcomes in craniofacial and pediatric plastic surgery. Clin Plast Surg. 2013 Apr;40(2):305-12.
CLEFT-Q NORMATIVE DATA PUBLICATIONS
- Klassen AF, Riff KWW, Longmire NM, Albert A, Allen GC, Aydin MA, Baker SB, Cano SJ, Chan AJ, Courtemanche DJ, Dreise MM, Goldstein JA, Goodacre TEE, Harman KE, Munill M, Mahony AO, Aguilera MP, Peterson P, Pusic AL, Slator R, Stiernman M, Tsangaris E, Tholpady SS, Vargas F, Forrest CR. 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. CMAJ. 2018 Apr 16;190(15):E455-E462.
Our Team
Dr Anne Klassen
McMaster University, Canada
Q-Portfolio
Dr Karen Wong Riff
Hospital for Sick Children, Canada
Q-Portfolio
Setting the Bar in
Patient Reported
Outcome Measurement
Funding Provided By:
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.
Beyond the physician's perspective: A review of patient-reported outcomes in dermatologic surgery and cosmetic dermatology. - PubMed - NCBI https://t.co/6T03aQAUnq
BODY-Q is now in 11 language - here's a new publication:
[German linguistic validation of the BODY-Q: standardised PRO instrument after bariatric and bodycontouring surgery]. - PubMed - NCBI https://t.co/BriwsiDavS
@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.