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Multicenter Study
. 2018 Apr 16;190(15):E455-E462.
doi: 10.1503/cmaj.170289.

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

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Free PMC article
Multicenter Study

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

Anne F Klassen et al. CMAJ. .
Free PMC article

Abstract

Background: Patients with cleft lip and/or palate can undergo numerous procedures to improve appearance, speech, dentition and hearing. We developed a cleft-specific patient-reported outcome instrument to facilitate rigorous international measurement and benchmarking.

Methods: Data were collected from patients aged 8-29 years with cleft lip and/or palate at 30 hospitals in 12 countries between October 2014 and November 2016. Rasch measurement theory analysis was used to refine the scales and to examine reliability and validity. Normative CLEFT-Q values were computed for age, sex and cleft type.

Results: Analysis led to the refinement of an eating and drinking checklist and 12 scales measuring appearance (of the face, nose, nostrils, teeth, lips, jaws and cleft lip scar), health-related quality of life (psychological, social, school, speech distress) and speech function. All scales met the requirements of the Rasch model. Analysis to explore differential item functioning by age, sex and country provided evidence to support the use of a common scoring algorithm for each scale for international use. Lower (worse) scores on CLEFT-Q scales were associated with having a speech problem, being unhappy with facial appearance, and needing future cleft-related treatments, providing evidence of construct validity. Normative values for age, sex and cleft type showed poorer outcomes associated with older age, female sex and having a visible cleft.

Interpretation: The CLEFT-Q represents a rigorously developed instrument that can be used internationally to collect and compare evidence-based outcomes data from patients aged 8-29 years of age with cleft lip and/or palate.

Conflict of interest statement

Competing interests: Anne Klassen and Karen Wong Riff are co-developers of the CLEFT-Q and, as such, could potentially receive a share of any licence revenues as royalties based on their institutions’ inventor sharing policy if the CLEFT-Q is used in a for profit study.

Figures

Figure 1:
Figure 1:
A) Mean scores for CLEFT-Q appearance and health-related quality of life scales based on answer to question: “How happy are you about how you look (your appearance)?” B) Mean scores for CLEFT-Q speech and health-related quality of life scales by current speech problem. Note: Mod = moderate, psych = psychological.
Figure 2:
Figure 2:
Mean scores for CLEFT-Q by cleft type. Note: Psych = psychological.

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