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Patient Reported Outcomes Among Children With Cleft Lip And/or Palate Who Desire Revision Surgery
Kavitha Ranganathan, M.D., Danielle Shapiro, PhD, Seth A. Warschausky, PhD, Christian J. Vercler, MD, Steven J. Kasten, MD, Steven R. Buchman, MD, Jennifer F. Waljee, MD, MS, MPH.
University of Michigan Health Systems, Ann Arbor, MI, USA.

PURPOSE: Children with cleft lip and/or palate (CLCP) undergo numerous procedures, but little is known about the desire for surgical revision. The purpose of this study is to examine the relationship between patient-reported outcomes (PROs) and the desire for revision surgery among children with CLCP.
METHODS: We surveyed children with CLCP treated in a multidisciplinary cleft clinic who were at least five years old (n=53). The Cleft Evaluation Profile (CEP), Pediatric Quality of Life Inventory (PQL), and PROMIS Stigma (PS) instruments were administered. Children were queried regarding desire for surgical revision. We used linear regression models to compare children who desired revision to those who did not.
RESULTS: Among these children, 51% desired revision. Children most commonly desired revision of the dentition (n=25), nose (n=19), and lip (n=12). Children desiring revision reported poorer outcomes on CEP (2.9±.92 vs. 1.8±.87, p<.001), PQL (75.0±11.3 vs. 84.4±11.1, p<.007), and PS (9.0±3.9 vs. 5.3±3.9, p<.006) compared to children who did not desire revision (Table 1). Parent perceptions did not differ from child perceptions using CEP (2.86±.92 vs. 3.39±1.04, p=.06) and PQL (77.6±13.6 vs. 75.0±11.3, p=.63). However, these parents reported higher levels of stigma than their children (8.96±4.88 vs. 11.72±4.12, p=.03).
CONCLUSIONS: Children with CLCP desiring revision report stigmatization and poorer quality of life. It is important to screen children and parents regarding the desire for revision to optimize patient outcomes.
Table 1. Differences in quality of life and psychosocial outcomes among children with CLCP based on desire for revision surgery.
Desire for RevisionCleft Evaluation ProfilePediatric Quality of Life InventoryPROMIS Stigma
MeanMeanMean
Yes2.9±0.92p<0.00175.0±11.3p<0.0079.0 ± 3.9p<0.006
No1.8±0.8784.4±11.15.3± 3.9


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