Self‐Reported Access to Specialized Genetics Providers Among Families of Young Children With Birth Defects in Texas

Le résumé fourni par la source

Specialized genetics providers can help families of children with birth defects understand their child's condition and guide their medical treatment. The Birth Defects Epidemiology and Surveillance Branch (BDESB) routinely connects young children from the Texas Birth Defects Registry (TBDR) with select birth defects to agency social workers for assistance. Beginning in November 2022, social workers asked parents they reached: "Has the parent or child met with a geneticist or genetic counselor (or visited a genetics clinic)?". Responses were tabulated, overall and by select characteristics of interest. A chi-square test was used to evaluate if these characteristics were associated (p < 0.05) with self-reported access to a specialized genetics provider. Among the 400 families reached, 261 (65%) did not recall accessing specialized genetics providers. Lower access was observed among children with spina bifida or encephalocele, isolated birth defects, children without medical insurance, children meeting CDC developmental milestones, and younger mothers. Lower access was also observed in certain areas of the state, including the Texas-Mexico border. Our findings suggest that, in Texas, more than half (65%) of families of children with select birth defects are not accessing specialized genetics providers, and additional research is needed to work toward increasing access.

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