Validation of cleft-q scales for use in children and young adults with facial conditions: Face-q craniofacial module

Abstract

Background/Purpose: Patient-reported outcome measures (PROMs) are important for capturing the patient perspective. These tools can aid in treatment evaluation and clinical decision-making. The CLEFTQ is a PROM that includes 12 independently functioning scales that measure appearance (face, nose, nostrils, teeth, lips, jaws), healthrelated quality of life (psychological, social, school, speech distress) and speech function, and an eating/drinking checklist. This PROM was originally develop for patients with cleft lip and palate, however, in a previous study, the content of the CLEFT-Q scales was found to be valid for patients with other craniofacial conditions. The current aim is to examine the psychometric properties of the CLEFT-Q scales internationally in patients 8 to 29 years of age with a broad range of facial conditions. Methods/Description: Patients aged 8 to 29 years with a facial condition completed relevant CLEFT-Q scales between October 2016 and December 2019. Rasch measurement theory (RMT) analysis was used to examine differential item function (DIF) between the original CLEFT-Q sample and new craniofacial sample (n = 2036). Properties of the scales were also examined in a combined cleft and craniofacial sample (n = 4743) including test of item fit, targeting, DIF, and reliability. Results: When the cleft and noncleft samples were compared, DIF was observed for 23 CLEFT-Q items. However, when items with DIF were split by sample, correlations between the original and split person locations DIF had negligible impact on scale scoring (correlations >0.995). In the combined sample, RMT analysis led to retention of original content for 10 CLEFT-Q scales, modification of the Teeth scale, and the addition of an Eating/Drinking scale. Data fit the Rasch model for 11 of the 12 CLEFT-Q scales (exception School, P = .04). Person separation index, and Cronbach α values met criteria. Conclusions: The scales described by this study can be used to collect and compare patient-reported outcomes from children and young adults with cleft and noncleft craniofacial conditions.L6351874592021-06-09 <br />