Normative CLEFT-Q Data from the eneral Dutch population

Abstract

Patient-Reported Outcome Measures (PROMs), such as the CLEFT-Q, have become essential for outcomes in patients with CL/P. Normative values of the CLEFT-Q for non-CL/P peers have not yet been established. This study aims to establish normative values for the CLEFT-Q in the general Dutch population. Dutch nationals aged 16-24 years without CL/P were recruited through an online survey. Participants completed the CLEFT-Q, excluding the lip scar and eating and drinking scales. Data were weighted based on the Dutch Central Bureau of Statistics. Normative values were calculated as means and standard deviations, stratified by sex and education category. Tobit regression models were used to analyze associations between CLEFT-Q scores and demographic variables. In total, 870 participants responded, of which 160 were excluded due to potential craniofacial anomalies. Significant variations in CLEFT-Q scores based on sex were found, with females scoring lower than males. Level of education had a modest impact on CLEFT-Q scores, with lower education having lower scores on certain scales. Age marginally influenced CLEFT-Q scores, with younger participants scoring lower than older participants. Positive correlations were found between all CLEFT-Q scales. The strongest correlation was observed between the social and school functioning scales. This study provides the first set of normative values for the CLEFT-Q in the Dutch general population. Significant differences in CLEFT-Q scores based on sex, level of education and age were found. These normative values are useful for clinicians interpreting CLEFT-Q scores and help make informed decisions.