Intellectual outcomes following protocol management in Crouzon, Pfeiffer, and Muenke syndromes

Abstract

Patients with craniosynostosis syndromes are traditionally managed by a dedicated craniofacial unit. Optimal long-term management of these anomalies is unclear, but in the Australian Craniofacial Unit, it involves ongoing care by an integrated multidisciplinary team, following a protocol that commences at birth and continues until the patient reaches skeletal maturity. The Australian Craniofacial Unit has, for the last 35 years, collected a significant series of patients with these conditions who have completed management from birth to maturity.The aim of this study was to review this series of patients and assess the long-term outcomes of protocol management, focusing in particular on psychologic and social aspects.This review demonstrates that these patients can do well in society, and many achieve higher education and find full-time employment. Regular follow-up and comprehensive multidisciplinary management allows for timely identification of any problems and appropriate intervention. This then helps to maximize the overall outcome for these patients.