Robyn McCarthy, Joshua Pink, Leana Olivier, David Gilbert, Raja Mukherjee, Penny A Cook
Establishing a universally accepted case definition and diagnostic guidelines for FASD is essential. Reporting of community engagement and involvement of individuals with lived experience should become standard practice and the development of objective measures for PAE identification is increasingly necessary.
ISSUES: Fetal alcohol spectrum disorder (FASD) is a prevalent yet widely underdiagnosed neurodevelopmental condition resulting from prenatal alcohol exposure (PAE). FASD has profound lifelong implications for affected individuals, their caregivers and society. Active case ascertainment is the gold standard for estimating FASD prevalence, but methodological variability limits comparability across studies. This review aims to systematically evaluate the methodologies and reporting practices of school-based FASD prevalence studies, with the goal of identifying best practices and informing standardised approaches to enhance the validity, reproducibility and policy relevance of future research.
APPROACH: A systematic review was conducted to examine the methods, measures, strengths and limitations of school-based FASD prevalence studies. Five databases were searched using key terms associated with FASD prevalence in school settings. Identified studies were screened and data were extracted and analysed.
KEY FINDINGS: The 29 included studies revealed variability in case definitions, diagnostic frameworks, tools and measures. Most studies employed active case ascertainment designs. Non-participation rates and details on community engagement or co-creation activities were often underreported. PAE assessment predominantly relied on maternal self-report.
IMPLICATIONS: Despite a shared goal of identifying FASD, methodological variability across studies may limit the comparability of outcomes. A lack of robust prevalence data impedes adequate funding for prevention, diagnosis and support services.
CONCLUSION: Establishing a universally accepted case definition and diagnostic guidelines for FASD is essential. Reporting of community engagement and involvement of individuals with lived experience should become standard practice and the development of objective measures for PAE identification is increasingly necessary.