Satisfaction with Appearance in Patients with Cleft Lip and/or Palate: Patient Reported Outcomes Using the CLEFT-Q at the University of Pittsburgh
Liliana Camison, MD1, Michelle Zhang, BS1, Karen Wong-Riff, MD2, Anne F. Klassen, PhD2, Jesse A. Goldstein, MD1.
1University of Pittsburgh, Pittsburgh, PA, USA, 2McMaster University, Ontario, ON, Canada.
To date, surgical outcomes after cleft lip and/or palate (CL/P) surgery have been largely determined by the assessment of surgeons or bystanders, underestimating what might matter to patients. The CLEFT-Q is a new, validated patient-reported outcome (PRO) instrument that evaluates patient satisfaction and QOL in children and adolescents with CL/P through different life domains. Our aim was to evaluate the satisfaction of patients with CL/P with their own appearance, using the CLEFT-Q as a metric.
Patients 8-29 years with a diagnosis of CL/P visiting the multidisciplinary clinic from 2015-2016 were included during the phase II stage of the CLEFT-Q multicenter validation. The CLEFT-Q questionnaire was administered during the visit, ensuring it was filled with no parental interference. Only the appearance domain was used, including questions on face, nose, nostrils, lips, cleft scar, teeth and jaws. Rasch-transformed scores were analyzed using one-way ANOVAS to detect significant main effects and interactions between groups (p<0.05, two-tailed) with Fisher posthoc tests.
101 patients (female n=53; male n=48) were included, with diagnoses including the common range of CL/P deformities (CL, CP, CL+P, CL+A, and BL CL+P). The majority (55%) were aged 8-11; 37.6% between 12-17; and 6.9% aged 18 or older. Nose and nostril scores were the lowest of appearance satisfaction scores in patients whose deformity included CL. Patients with CP had a significantly higher nose and nostril scores compared to CL, CL+P, CL+A, and BL CL+P (p=0.003, 0.000, 0.029, and 0.039, respectively). Lip or cleft scar scores were not significantly different between any groups. While scores for nose appearance satisfaction did not vary significantly between age groups in males, scores trended lower 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 in the 12-17 years category. Females in the 18+ age group scored lower than males across all appearance items.
PRO tools are essential to understand what patients value to better guide surgical decisions. Adolescents are particularly vulnerable in terms of satisfaction with their appearance, which could warrant closer follow up. Nasal aesthetics are a particularly concerning feature to patients with any type of CL—even more so than lips. The lower satisfaction rates with increasing age in females should be addressed, and may warrant additional revisions with closer attention to cosmetic details when reaching adulthood.
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