cleft-q-colour

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

Portrait of a baby girl who has a cleft palate looking over the shoulder of her mother

SHORT INDEPENDENTLY FUNCTIONING SCALES
Choice of scales customizable for different needs

cleft-baby

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

Baby looking at the camera

USED WIDELY AROUND THE WORLD
Available in multiple languages

Asian preschooler holding a book. Please view these along with other

STRONG PSYCHOMETRIC PERFORMANCE
Rigorously developed and sensitive to clinical change

CONCEPT-DRIVEN APPROACH

The CLEFT-Q was developed from 138 concept elicitation interviews with children and young adults with cleft lip and/or palate from 6 countries. To establish content validity, we conducted 69 cognitive interviews and obtained input from 44 international experts. The CLEFT-Q was then field-tested in an international sample of 2434 patients from 30 hospitals in 12 countries.

MODULAR DESIGN

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. The variety of scales provides flexibility to choose the subset of scales best suited to measure the outcomes of interest in any given study or clinical situation.

Advancing Knowledge &
Improving Health Outcomes

Research

Field-tested in sample of 2434 patients with cleft lip and/or palate in 12 countries.

Industry

Can be used in international clinical trials of craniofacial treatments.

Patient Care

Designed using a modern psychometric approach to facilitate use in patient care.

Scale Structure

The CLEFT-Q is a rigorously developed patient-reported outcome (PRO) measure that can be used internationally to collect and compare evidence-based outcomes data from patients ages 8 to 29 years with cleft lip and/or palate. The CLEFT-Q measures 3 overarching domains. Each domain is composed of 1 or more independently functioning scales. Clinicians and researchers are able to administer the subset of scales relevant to their situation.

APPEARANCE

Seven scales measure 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

A speech scale measures problems with speaking, such as having trouble with words or sentences, and having to speak slowly. A checklist measures eating and drinking problems, such as having food get stuck in a hole in the mouth.

HEALTH-RELATED QUALITY OF LIFE

Four scales measure aspects of health-related quality of life, including psychological, social and school function and speech-related distress.

CLEFT-Q FRAMEWORK

Our Team

Dr Anne Klassen

Dr Anne Klassen

McMaster University, Canada
Dr Karen Wong Riff

Dr Karen Wong Riff

Hospital for Sick Children, Canada

Questions?