Caregiver-reported evaluation for and diagnosis of fetal alcohol spectrum disorders in the United States.

BACKGROUND

In-person, active case ascertainment studies suggest the prevalence of children with fetal alcohol spectrum disorders (FASDs), lifelong disorders caused by prenatal alcohol exposure, in selected communities ranges from 11.3 to 71.4 per 1000 (including diagnosed and undiagnosed FASDs). National, population-based estimates of children with an FASD diagnosis and who are at different stages of a prototypical diagnostic process are limited.

METHODS

Data are from the 2022-2024 National Survey of Children's Health (n = 160,640). We estimated the caregiver-reported prevalence of children who had ever been recommended for an FASD evaluation, received an FASD evaluation, and received an FASD diagnosis, overall and by demographic subgroups; Chi-square tests assessed differences by subgroup.

RESULTS

Based on caregiver report, 2.4 per 1000 children were recommended for an FASD evaluation, 3.1 per 1000 received an evaluation, and 2.0 per 1000 received an FASD diagnosis. Prevalence varied by several characteristics; for example, the prevalence of children with an FASD diagnosis was higher among those cared for by grandparents or other relations (10.8 per 1000, 95 % confidence interval [CI]: 7.2-16.0) than those cared for by two parents (1.2 per 1000, 95 % CI: 0.9-1.6). Of the 4.6 per 1000 children either recommended for an FASD evaluation, received an evaluation, or diagnosed with an FASD, 20.0 % had all three experiences.

CONCLUSIONS

These nationally representative, caregiver-reported estimates for children with an FASD diagnosis are lower than those from active case ascertainment studies, suggesting efforts are needed to improve the screening, evaluation, and diagnosis process for children suspected of an FASD.