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Applying Latent Profile Analysis to CLEFT-Q Data: A Framework for Understanding Patient Reported Outcomes in Cleft
Nicholas A Han1, Philip D Tolley1, Jing Huang2
1Division of Plastic, Reconstructive, and Oral Surgery, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Summary
This study identified six distinct patient profiles using the CLEFT-Q questionnaire for individuals with cleft lip and/or palate. These profiles, based on appearance and quality of life, can help personalize cleft care.
Area of Science:
- Plastic Surgery
- Patient-Reported Outcomes
- Pediatric Health
Background:
- Cleft lip and/or palate (CP±L) significantly impacts patient appearance, function, and quality of life.
- Understanding patient-reported outcomes is crucial for effective management of CP±L.
- The CLEFT-Q questionnaire measures various aspects of life affected by CP±L.
Purpose of the Study:
- To characterize distinct response profiles using the CLEFT-Q in patients with CP±L.
- To identify patterns in these profiles related to demographics and treatment.
- To explore the stability of these profiles over time.
Main Methods:
- Retrospective analysis of 923 CLEFT-Q responses from 596 patients (aged 8-29 years) with CP±L.
- Latent profile analysis (LPA) was employed to categorize patient responses into distinct profiles.
- Demographic data and longitudinal CLEFT-Q data were analyzed for profile associations and stability.
Main Results:
- Six latent profiles emerged: Universally Affected-Moderate (UA1), Universally Affected-Severe (UA2), Facial Appearance-Moderate (FA1), Facial Appearance-Severe (FA2), Social/School/Speech distress (SSS), and Minimally Distressed (MD).
- Severe profiles (UA2, FA2) were associated with older age and complete cleft lip, while the Minimally Distressed (MD) profile was linked to younger age and isolated cleft palate.
- 47.5% of patients remained in the same profile over time, with longer follow-up intervals predicting profile changes.
Conclusions:
- Latent profile analysis effectively categorizes CLEFT-Q responses into six clinically relevant profiles for CP±L patients.
- These profiles correlate with patient demographics and treatment outcomes, suggesting potential for personalized care.
- Further validation studies are recommended to confirm the clinical utility of these identified profiles.
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