Parameters of care for craniosynostosis: craniofacial and neurologic surgery perspectives

Abstract

Background: A multidisciplinary meeting was held from March 4 through 6, 2010, in Atlanta, Georgia, to conceptualize, map out, and operationalize the variables most relevant to the care of patients with craniosynostosis. In this article, the authors highlight the development of the craniofacial and neurologic surgery parameters of care.

Methods: Fifty-two conference attendees, representing a broad range of expertise in craniosynostosis care and 16 professional societies, participated in this working group. Literature and expert opinion were used to identify the variables important for the care of patients with craniosynostosis. In an iterative manner, specialty-specific data were compiled into draft recommendations and presented to all conference attendees. Cross-discipline analysis was used to assess the completeness of the data, facilitate exchange of ideas, and achieve consensus.

Results: Consensus was reached among the 52 conference attendees and two post hoc reviewers in 18 areas of craniosynostosis care. Longitudinal parameters of care were developed for the diagnosis, treatment, and management of craniosynostosis in each of the specialty areas of care, from prenatal evaluation to completion of care in adulthood.

Conclusions: To our knowledge, this is the first multidisciplinary effort to develop parameters of care and best practices for craniosynostosis. In conjunction with patient input, these parameters may help to heuristically develop core outcome sets that are important not only to patients and their families, but also to health care providers and health services and outcome researchers.

Clinical question/level of evidence: Therapeutic, V.