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

 0 Người đánh giá. Xếp hạng trung bình 0

Tác giả: A J Agopian, Dayana Betancourt, Margaret Drummond-Borg, Henal Gandhi, Christina Kubenka, Daniel Riconda, Charles Shumate, Claire Singletary, Caitlyn Yantz

Ngôn ngữ: eng

Ký hiệu phân loại: 378.101 College and university administration

Thông tin xuất bản: United States : American journal of medical genetics. Part A , 2025

Mô tả vật lý:

Bộ sưu tập: NCBI

ID: 169734

 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.
Tạo bộ sưu tập với mã QR

THƯ VIỆN - TRƯỜNG ĐẠI HỌC CÔNG NGHỆ TP.HCM

ĐT: (028) 36225755 | Email: tt.thuvien@hutech.edu.vn

Copyright @2024 THƯ VIỆN HUTECH