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Defining Variations in Satisfaction with Cleft-specific Outcomes as Pediatric Patients Mature
Alexandra O. Luby, MS; Kavitha Ranganathan, MD; Michaella Baker, BS; Anne Patterson, BS; Steven R. Buchman, MD; Jennifer F. Waljee, MD, MS, MPH
University of Michigan
2019-02-12
Presenter: Alexandra O. Luby, MS
Affidavit:
Alex is a medical student working in my laboratory. She is not a resident, so she does not have a program director. I am the craniofacial fellowship program director and a senior investigator of this project. I certify that this submission represents Alex's original work, as she has performed majority of the work on this project and she has my approval to submit this work and present it.
Director Name: Steven R. Buchman
Author Category: Medical Student
Presentation Category: Clinical
Abstract Category: Craniomaxillofacial
Background: Children with cleft lip and/or palate (CLCP) undergo numerous procedures during childhood, however, changes in satisfaction over time as pediatric patients mature has not been well studied. The purpose of this study was to define patient-reported outcomes including satisfaction with cleft-specific aspects of appearance and function in a longitudinal fashion over four years.
Methods: Children with CLCP (n=175) were surveyed annually (2014-2018) using a Revision questionnaire, Cleft Evaluation Profile (CEP), and Satisfaction With Appearance questionnaire (SWAP). Linear mixed modeling was used to ascertain the relationship between CEP and SWAP scores with desire for revision over time.
Results: Of the 175 patients, 57.7% desired revision at time 1, where the average age was 10.0 (SD=3.2) years. Among these, 47.5% desired revision to the nose, 47.5% to dentition, and 29.7% to lips. Majority (44.6%) desired revision to improve appearance. Of those who did not desire revision initially, 50.0% desired revision later. Desire for revision was associated with each unit decrease in CEP(OR=0.392; p=0.000) and grouped aspects of SWAP, including overall and facial appearance satisfaction(OR=0.474;p=0.000) and social satisfaction(OR=0.718;p=0.002). Initial diagnosis influenced desire for revision; patients with cleft lip and palate had greater odds of desiring revision compared to isolated cleft lip patients(OR=2.48;p=0.037).
Conclusions: Both CEP and SWAP are significantly associated with desire for revision and can be utilized to monitor how pediatric patient perceptions evolve as they mature. Understanding that patient-reported CLCP outcomes change in this manner may influence the time course of revision surgery and other interventions at specific developmental milestones.
