“Quality of Life in Adults with Non-Syndromic Craniosynostosis”

Background: While studies have analyzed quality of life (QOL) in children with non-syndromic craniosynostosis (NSC), to date nobody has investigated long-term QOL in adults with NSC. The purpose of this study is to compare QOL in adult NSC patients with a cohort of unaffected controls. Methods: We queried our institution's prospectively maintained craniofacial registry for NSC patients 18 years and older, and administered the validated World Health Organization Quality of Life (WHOQOL-BREF) questionnaire. Responses were compared, using a two-sample t-test, to an age-matched, United States, normative database provided by the World Health Organization (WHO). Results: 151 adults met inclusion criteria: 52 were successfully contacted and 32 completed the WHOQOL-BREF. Average age of respondents was 23.0±6.1 years old (range, 18.1 to 42.1). 12 subjects had metopic synostosis, 15 had unicoronal, and 5 had sagittal. NSC patients had a superior quality of life compared to comparative norms in all domains: physical health (17.8±2.7 vs. 15.5±3.2, p0.05), while all individual subtypes maintained superior or equivalent QOL relative to controls. Demographic variables, Whitaker score, and number of surgical interventions did not correlate with differences in QOL. Conclusion: Adult patients previously treated for NSC perceive their quality of life to be high, superior to that of a normative United States sample. Future work will seek to analyze additional patients and better understand the reasons behind these findings. Financial Disclosure: None of the authors has a financial interest in any of the products, devices, or drugs mentioned in this manuscript. Conflicts of Interest: None of the authors listed have any conflicts of interest to report. Funding source: This study did not have any funding sources. IRB: This study was granted approval by the Institutional Review Board for research at the Children's Hospital of Philadelphia. Corresponding author: Scott P. Bartlett, MD, Chief of Plastic and Reconstructive Surgery, The Children's Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania, Colket Translational Research Building, 3501 Civic Center Blvd, 9th floor, Philadelphia, PA 19104, Email: bartletts@email.chop.edu, Telephone: 215-590-2214, Fax: 215-590-2496 ©2018American Society of Plastic Surgeons

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