Applying Latent Profile Analysis to CLEFT-Q Data: A Framework for Understanding Patient Reported Outcomes in Cleft Care

Objective To describe characteristic CLEFT-Q response profiles and patterns in patients with cleft palate and/or lip (CP ± L). Design Retrospective analysis using latent profile analysis (LPA) to categorize patient-reported outcome responses into distinct profiles. Setting Tertiary care pediatric hospital with multidisciplinary cleft team. Patients, Participants Patients aged 8–29 years with CP ± L completing CLEFT-Q questionnaires from September 2021 to June 2025 ( n = 596). Total of 923 responses analyzed after excluding 94 responses from patients under 8 years. Interventions Administration of the 119-item CLEFT-Q questionnaire prior to clinic visits, measuring appearance, function, and quality of life. Main Outcome Measure(s) Six latent profiles identified through LPA based on CLEFT-Q scores. Secondary outcomes included profile stability and surgical effects. Results Six profiles of CLEFT-Q responses emerged among subjects: Universally Affected-Moderate (UA1, n = 228, 24.7%), Universally Affected-Severe (UA2, n = 119, 12.9%), Facial Appearance-Moderate (FA1, n = 183, 19.8%), Facial Appearance-Severe (FA2, n = 56, 6.1%), Social/School/Speech distress (SSS, n = 95, 10.3%), and Minimally Distressed (MD, n = 242, 26.2%). Patients in severe profiles (UA2 and FA2) were older ( P < .001) and more likely to have complete cleft lip ( P < .001), while patients in the MD profile were younger and more likely to have isolated cleft palate ( P < .001). Among 279 patients with longitudinal CLEFT-Q data, 47.5% remained in the same profile at subsequent CLEFT-Q response, with longer follow-up intervals predicting profile change ( P = .049). Conclusions Latent profile analysis categorizes CLEFT-Q responses into six clinically meaningful profiles correlating with demographics and treatment outcomes. This approach may guide personalized cleft care, though additional studies are needed for validation.