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The Satisfaction with Appearance in Patients with Cleft Lip and Palate: Patient-Reported Outcomes Using the Validated CLEFT-Q Survey
Liliana Camison, MD; Michelle Zhang, BS; Joseph E. Losee, MD; Karen Wong-Riff, MD; Anne F. Klassen, PhD; Jesse A. Goldstein, MD.
University of Pittsburgh, Department of Plastic Surgery
2020-02-15
Presenter: Liliana Camison
Affidavit:
Yes
Director Name: Vu Nguyen
Author Category: Resident Plastic Surgery
Presentation Category: Clinical
Abstract Category: Craniomaxillofacial
Background:
Surgical outcomes after cleft lip and/or palate (CL/P) surgery are usually assessed by others, underestimating what matters to patients. The CLEFT-Q is a validated patient-reported outcome (PRO) instrument for this population. We aimed to evaluate the satisfaction of patients with CL/P with their own appearance, using the CLEFT-Q as a metric.
Methods:
Patients 8-29 years with CL/P seen in our center between 2015-2016 were included. The questionnaire was administered without parental interference. Only appearance questions were used (face/nose/nostrils/lips/cleft scar/teeth/jaws). Rasch-transformed scores were analyzed (p<0.05).
Results:
101 patients with the full spectrum of CL/P were included (Female=53; Male=48). 55% aged 8-11; 37.6% between 12-17; and 6.9% aged 18 +. Nose and nostril satisfaction scores were lowest in patients whose deformity included CL. Patients with CP had a significantly higher nose and nostril scores compared to CL, CL+P, CL+Alveolus, and Bilateral CL+P (p=0.003, 0.000, 0.029, and 0.039, respectively). Lip and cleft scar scores were not significantly different between groups. Nose satisfaction did not vary significantly between age groups in males, but trended down with increasing age in females (p=0.012). The same was seen in nostril scores (p=0.038), and trended for significance in lip scores (0.054). Satisfaction was lower at 12-17 years. Females in the 18+ age group scored lower across appearance items.
Conclusions:
Understanding what patients with CL/P value will help direct surgical efforts. Nasal appearance seems particularly concerning to patients; more than lips. Adolescents are less satisfied. Lower satisfaction rates with increasing age in females may warrant special attention.
