Systematic Screening of Communication Outcomes at Age 5 in Children Treated for Nonsyndromic Craniosynostosis
Justin Weinfeld, Christina Havstam, Marizela Kljajić, Clin Psychol, Lars Kölby, Peter Tarnow, Christina PerssonABSTRACT
Background
Previous research on communicative outcomes in children treated for nonsyndromic craniosynostosis (NSC) has yielded inconsistent findings, with reported prevalence rates of communicative difficulties varying widely. These discrepancies are attributable to small samples, heterogeneous age groups, and reliance on indirect or non‐domain‐specific outcome measures. There remains a need for systematic, age‐specific screening using validated tools to clarify the nature and prevalence of communicative vulnerabilities in this population.
Aims
The primary aim was to assess guardian‐reported communicative abilities in a consecutive cohort of 5‐year‐old children treated for NSC and compare outcomes with normative data. Secondary aims were to examine whether reported difficulties were predominantly speech‐language based or pragmatic, and to explore differences related to NSC subtype and timing of surgery.
Methods and Procedures
This cross‐sectional study included 157 children treated for NSC at a national craniofacial centre in Sweden. Guardians completed the Children's Communication Checklist–2 (CCC‐2) as part of routine 5‐year follow‐up. General Communication Composite (GCC) scores and subscale profiles were analysed and compared with published normative data. Group differences across synostosis type and surgical timing were examined using parametric and non‐parametric statistical methods.
Outcomes and Results
Eighty‐five percent of children scored within the normative range on the GCC. Fifteen percent scored below the clinical cut‐off, a proportion not significantly different from the normative sample. Group‐level differences were primarily observed in the domains of speech and language, with significantly lower scores in speech and syntax, while pragmatic difficulties were uncommon. No significant differences were found between craniosynostosis subtypes. Earlier surgery was associated with higher GCC scores in children with metopic NSC only.
Conclusion and Implications
Most children treated for NSC demonstrate age‐appropriate communicative abilities at 5 years of age. However, subtle vulnerabilities in speech and syntax were present in a subset of children. These findings support the use of screening in routine follow‐up to identify children who may benefit from further assessment, while suggesting that broad language disorder–like profiles are uncommon in this population.
WHAT THIS PAPER ADDS
What is already known on this subject
Previous studies report highly variable rates of speech and language difficulties in children treated for nonsyndromic craniosynostosis (NSC), ranging from low to markedly elevated prevalence.
What this study adds to the existing knowledge
In a large consecutive cohort of 5‐year‐old children treated for NSC, 85% showed age‐appropriate communicative abilities as rated by their guardians and did not differ significantly from normative data. Group‐level differences were confined to speech‐ and language domains (speech and syntax), while pragmatic difficulties were uncommon. Earlier surgery was associated with higher communication scores in children with metopic NSC only.