Quality of Life Metrics in Craniosynostosis: A Guide for Surgeons and Healthcare Practitioners

Craniosynostosis outcomes have traditionally been indexed by objective surgical variables including cephalic index, postoperative appearance, surgical time, and complications rates. However, a growing field of evidence implicates the importance of patient-centered health metrics in these disorders including Quality of Life (QoL) measurements and patient-reported outcomes. QoL analyses aim to encapsulate patient- and caregiver-level concerns through measures of cosmesis, self-image, societal integration, neurocognitive outcomes, and psychosocial well-being. The present chapter serves as a guide for surgeons and other healthcare practitioners to navigate the breadth of QoL issues implicated in both single and multiple suture craniosynostosis. Readers will be presented with a detailed examination of the current literature regarding QoL outcomes as they relate to both syndromic and nonsyndromic craniosynostoses. Discussion of these metrics will aim to support practitioners in establishing mutual surgical goals and expected outcomes based on individual patient and family considerations. It is important to note that this is a static book chapter in a dynamic field of research. The data presented here will need to be referenced to the growing new literature on the topic as we increase our understanding of these important patient-centered healthcare metrics.