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

ObjectiveTo describe characteristic CLEFT-Q response profiles and patterns in patients with cleft palate and/or lip (CP ± L).DesignRetrospective analysis using latent profile analysis (LPA) to categorize patient-reported outcome responses into distinct profiles.SettingTertiary care pediatric hospital with multidisciplinary cleft team.Patients, ParticipantsPatients aged 8-29 years with CP ± L completing CLEFT-Q questionnaires from September 2021 to June 2025 (<i>n</i> = 596). Total of 923 responses analyzed after excluding 94 responses from patients under 8 years.InterventionsAdministration 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.ResultsSix profiles of CLEFT-Q responses emerged among subjects: Universally Affected-Moderate (UA1, <i>n</i> = 228, 24.7%), Universally Affected-Severe (UA2, <i>n</i> = 119, 12.9%), Facial Appearance-Moderate (FA1, <i>n</i> = 183, 19.8%), Facial Appearance-Severe (FA2, <i>n</i> = 56, 6.1%), Social/School/Speech distress (SSS, <i>n</i> = 95, 10.3%), and Minimally Distressed (MD, <i>n</i> = 242, 26.2%). Patients in severe profiles (UA2 and FA2) were older (<i>P</i> < .001) and more likely to have complete cleft lip (<i>P</i> < .001), while patients in the MD profile were younger and more likely to have isolated cleft palate (<i>P</i> < .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 (<i>P</i> = .049).ConclusionsLatent 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.