Long-term health-related quality of life and satisfaction following fronto-orbital advancement in non-syndromic metopic synostosis: FACE-Q Craniofacial Module and SCAR-Q.

Abstract

Fronto-orbital advancement (FOA) for metopic synostosis aims to improve health-related quality of life (HRQoL) and appearance satisfaction. However, long-term patient-reported outcomes using validated tools remain scarce. This study evaluated HRQoL and appearance satisfaction using validated patient-reported outcome measures and compared the results with normative data. A retrospective study was conducted on patients with non-syndromic metopic synostosis born between 2003 and 2008 who underwent FOA at a single center. Participants completed the FACE-Q Craniofacial Module and SCAR-Q questionnaires. FACE-Q scores were compared with Dutch normative data. Pre-operative CT scans were used to assess initial severity using CranioRate. Fifty-seven patients at a median age of 18 years responded (58% response rate); 70% were men and median age at FOA was 11 months. Higher educational level was associated with better SCAR-Q symptom scores (β = 28.41, p = 0.02). Greater initial severity was linked to lower head shape scores (β = -4.61, p = 0.042). Other factors, including sex, mental health history, and age, did not significantly affect the outcomes. Compared with normative data, patients reported significantly better outcomes in head shape (p = 0.005), appearance distress (p < 0.001), psychological (p < 0.001), school (p < 0.001), and social functioning (p < 0.001). In conclusion, FOA for metopic synostosis is associated with excellent long-term HRQoL and satisfaction with appearance, with limited influence from most demographic or clinical predictors.