Quality of Life in Adults with Nonsyndromic Craniosynostosis.

BACKGROUND: Although studies have analyzed quality of life in children with nonsyndromic craniosynostosis, to date nobody has investigated long-term quality of life in adults with nonsyndromic craniosynostosis. The purpose of this study was to compare quality of life in adult nonsyndromic craniosynostosis patients with a cohort of unaffected controls.

METHODS: The authors queried their institution's prospectively maintained craniofacial registry for nonsyndromic craniosynostosis patients aged 18 years and older, and administered the validated World Health Organization Quality of Life Biomedical Research and Education Foundation questionnaire. Responses were compared, using a two-sample t test, to an age-matched U.S. normative database provided by the World Health Organization.

RESULTS: One hundred fifty-one adults met inclusion criteria: 52 were successfully contacted and 32 completed the questionnaire. Average age of respondents was 23.0 ± 6.1 years (range, 18.1 to 42.1 years). Nonsyndromic craniosynostosis patients had a superior quality of life compared with comparative norms in all domains: physical health (17.8 ± 2.7 versus 15.5 ± 3.2; p < 0.001), psychological (16.3 ± 2.9 versus 13.8 ± 3.2; p < 0.001), social (16.9 ± 2.6 versus 13.2 ± 3.6; p < 0.001), and environmental (17.2 ± 2.5 versus 11.7 ± 2.7; p < 0.001). Comparison between single-suture subtypes revealed no difference in any quality-of-life domain (p > 0.05).

CONCLUSIONS: Adult patients previously treated for nonsyndromic craniosynostosis perceive their quality of life to be high, superior to that of a normative U.S.

SAMPLE: Future work will seek to analyze additional patients and better understand the reasons behind these findings.