STATUS: Active Project
There is a need to better understand how Long COVID symptoms present in children and how outcomes of health and well-being differ among children who have Long COVID compared to other children. Research has been limited by a dearth of data sources that link COVID-19 infections, pediatric outcomes, social determinants of health (SDOH), and family experiences. Because SDOH and family experiences are crucial context for the patient-centeredness aspect of pediatric patient-centered outcomes research (PCOR), linked longitudinal data are needed to understand the trajectory of children’s well-being, causal pathways of risk and protective factors, and effectiveness of health care services.
To address these gaps in data capacity, HRSA’s Maternal and Child Health Bureau (MCHB) will link data from the National Survey of Children’s Health Longitudinal Cohort (NSCH-LC) Study, a follow-up study of 60,000 children from the 2018 and 2019 NSCH cohorts, to data from the Transformed Medicaid Statistical Information System (T-MSIS). The resulting data file will provide a unique source of high-quality, longitudinal data on pediatric health services and treatment data linked to longitudinal data on child development, academic performance, school disruptions, mental health, caregiver health, and SDOH before, during, and after the COVID-19 pandemic that cannot be garnered from existing data sources or linkages to deidentified data. HRSA MCHB will also develop a standardized process for linking NSCH-LC and T-MSIS data to support future linkages.
PROJECT PURPOSE & GOALS
The goals of this project are to provide accessible, linked, longitudinal data for pediatric PCOR studies related to COVID-19 through accomplishment of the following objectives:
- Produce a linked data file of NSCH-LC and Medicaid claims data for research, which will be available through the Federal Statistical Research Data Centers (FSRDC) system
- Establish a standardized process for linking NSCH-LC data to Medicaid claims data, including technical documentation and user guides
- Provide high-level COVID-19- related information on children in the U.S. via interactive queries through HRSA MCHB’s Data Resource Center