Identifying Risk Factors for Delayed Craniosynostosis Diagnosis and Barriers in Access to Care: A Retrospective...

Early diagnosis of craniosynostosis is crucial to providing minimally invasive surgery (MIS) options to families. Compared with open cranial vault reconstruction (OCVR), MIS is associated with improved patient outcomes, faster postoperative healing, improved cosmetic appearance, and reduced postoperative complications. This study aims to identify specific risk factors associated with delayed presentation for craniosynostosis repair at the University of Florida.

A retrospective chart review was conducted of patients under the age of 18 receiving OCVR, endoscopic strip craniectomy, or spring-assisted craniectomy at UF for the treatment of craniosynostosis between 2010 and 2022. Patient and household demographics, craniosynostosis characteristics, and reported referral delays were recorded and compared for patients receiving OCVR with MIS.

One hundred forty-one patients were included in this analysis (65.3% male). Seventeen (12.1%) patients experienced documented referral delay. Ninety patients (63.8%) received OCVR and 45 (32.36%) MIS. Female sex, Black or African American race, multisuture craniosynostosis, median income by zip code, and an increasing number of siblings were significantly associated with older age at initial craniofacial appointment, documented delays in care, and age over 6 months at initial appointment. Black or African American race (OR: 27.30, 95% CI: 3.37-220.89) and multisuture craniosynostosis (OR: 11.58, 95% CI: 2.73-49.12) were associated with significantly increased odds of requiring OCVR, while both groups had significantly increased odds of being evaluated after 6 months of age. On subgroup analysis for isolated sagittal craniosynostosis, female sex, Black/African American race, Hispanic/Latino ethnicity, and multiple siblings were associated with increased age at first appointment, and Black/African American race was associated with age over 6 months at that appointment, but no other outcomes studied were significant.

Here, we document several demographic characteristics that are associated with delays in craniosynostosis clinic referral and later age at evaluations. In our institution, few who qualified for MIS intervention at the time of evaluation underwent open surgery, but Black/African American patients and those with multisuture involvement had significantly reduced odds of being evaluated before 6 months of age and were more likely to require OCVR. These findings highlight racial and socioeconomic disparities in craniosynostosis care, emphasizing the need for targeted interventions to promote timely diagnosis and equitable surgical counseling.