Current Management of Craniosynostosis: A Nordic Pediatric Neurosurgery Network Study

Historically, management of craniosynostosis (CS) has been marked by substantial variation. Although recent advances in diagnostics, minimally invasive techniques, and computer-assisted planning might be expected to promote greater uniformity, significant differences persist, as shown in a large US survey of current practice patterns. To clarify the extent of heterogeneity in the Nordic countries (28 million inhabitants), the authors conducted a comprehensive survey of all centers treating CS in the region. All 11 centers responded (100%). Marked heterogeneity was evident across organizational structures, preferred surgical techniques, and follow-up routines. Although Norway has fully centralized treatment of CS, Denmark and Sweden divide management between 2 high-volume centers each, and Finland uses a mixed model combining major reference centers with smaller regional units. Surgical management of isolated sagittal synostosis also varies substantially, ranging from minimally invasive suturectomy with postoperative helmet therapy (9%) and spring-assisted cranioplasty (27%) to open suturectomy/strip craniectomy (9%) and more extensive cranial vault remodeling including H-craniectomy (55%). Syndromic and multi-suture cases are generally managed in multidisciplinary settings, although team composition differs between centers. Additional variation was seen in the use of computer-assisted planning, 3D models, intraoperative cutting guides, postoperative imaging, neurocognitive testing, craniometry, and patient-reported or parent-reported outcome measures. Despite advances in surgical techniques and technology, CS management across the Nordic region remains highly heterogeneous. Whether this variation affects neurocognitive, cosmetic, or functional outcomes is unknown. Future collaborative research will be essential to harmonize care and ensure optimal outcomes for children with craniosynostosis.