cleft-q-colour

FREE TO NON-PROFIT USERS
Easily available to clinicians and researchers

woman with stitches on her lip.

SHORT INDEPENDENTLY FUNCTIONING SCALES
Choice of scales customizable for different needs

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MEASURING WHAT MATTERS TO PATIENTS
Appearance, quality of life, adverse effects

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USED WIDELY AROUND THE WORLD
Available in multiple languages

School Kid

STRONG PSYCHOMETRIC PERFORMANCE
Rigorously developed and sensitive to clinical change

CLEFT-Q

MEASURING WHAT MATTERS TO PATIENTS

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VIEW USER’S GUIDE

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

Research

CLEFT-Q was field-tested with 2434 patients with cleft lip and/or palate at 30 hospitals in 12 countries.

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.

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, 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

APPEARANCE

  • Cleft Lip Scar

  • Face Overall

  • Jaws

  • Nose

  • Nostrils

  • Teeth

FACIAL FUNCTION

  • Eating / Drinking

  • Speech

QUALITY OF LIFE

  • Psychological Function

  • School Function

  • Speech Distress

  • Social Function

Publications

Select a section to see list of relevant publications

CLEFT-Q DEVELOPMENT AND VALIDATION PUBLICATIONS

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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

  1. 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

Dr Anne Klassen

McMaster University, Canada
Dr Karen Wong Riff

Dr Karen Wong Riff

Hospital for Sick Children, Canada
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