Connecting children with birth defects to health and social service programs: A collaboration between the Texas Birth Defects Registry and agency social workers
Year: 2022
Type: article
Study design: Observational Study
Abstract: BACKGROUND: Timely referral to services for children born with birth defects can improve health outcomes. Birth defects surveillance registries may be a valuable data source for connecting children to health and social service programs. METHODS: Population-based, state-wide data from the Texas Birth Defects Registry (TBDR) at the Texas Department of State Health Services (DSHS) were used to connect children 9-18 months old, born with select birth defects with DSHS social workers. The social workers reviewed developmental milestones and referred children and their families to various health and social service programs. We tabulated the proportions of children meeting milestones and referral characteristics by referral program type and type of birth defect. RESULTS: Social workers reached 67% (909/1,362) of identified families. Over half of children (54%, 488/909) were not meeting the developmental milestones for their age. Social workers provided over 3,000 program referrals, including referring 21% (194/909) of children to Early Childhood Intervention (ECI) and 28% (257/909) to case management. CONCLUSION: Our results illustrate a method of leveraging a birth defects surveillance system for referral services. Given the large number of referrals made, our findings suggest that birth defects registries can be a valuable source of data for referring children to programs.
Source: Birth Defects Research
DOI: 10.1002/bdr2.2126
Language: English
Subfield: Surgery
Field: Medicine
Domain: Health Sciences
Open Access status: green
Awards: A multidisciplinary approach for identifying and characterizing novel congenital malformation syndromes, BIRTH DEFECTS SURVEILLANCE IN TEXAS: METHODOLOGICAL ENHANCEMENT AND IMPACTFUL DATA UTILIZATION, STRENGTHENING BIRTH DEFECTS SURVEILLANCE IN TEXAS: INNOVATIVE DATA LINKAGES, APPLIED EPIDEMIOLOGY, AND ENHANCED PREVENTION AND OUTREACH - PROJECT ABSTRACT SUMMARY THE BIRTH DEFECTS AND EPIDEMIOLOGY SURVEILLANCE BRANCH AT THE DEPARTMENT OF STATE HEALTH SERVICES HOUSES THE TEXAS BIRTH DEFECTS REGISTRY (TBDR). THE TBDR IS ONE OF THE LARGEST ACTIVE BIRTH DEFECT SURVEILLANCE PROGRAMS IN THE WORLD, HAS CONTRIBUTED TO OVER 350 PEER-REVIEWED PUBLICATIONS, AND MEETS OR EXCEEDS THE NATIONAL BIRTH DEFECTS PREVENTION NETWORK?S CRITERIA FOR ESSENTIAL REGISTRY PERFORMANCE ON ALL INDICATORS OF QUALITY. THE PROPOSED ACTIVITIES AND STRATEGIES OUTLINED IN THE NARRATIVE ARE INFORMED BY THE LESSONS LEARNED IN RESPONDING TO PAST THREATS (E.G., ZIKA), AND ONGOING THREATS (E.G., COVID-19) WHERE OUR SURVEILLANCE SPECIALISTS RAPIDLY ABSTRACTED 735 COVID-19 HOSPITALIZATION DISCHARGES IN TEXAS DURING AUGUST, 2020. THIS GRANT, IF AWARDED TO TEXAS, WILL SUPPORT THE TBDR?S ABILITY TO MOVE FORWARD IN THE IDENTIFIED AREAS. FIRST, OUR SURVEILLANCE CAPACITY WILL BE STRENGTHENED BY A NEW DATA SOURCE, TEXAS MEDICAID DATA, AND INTERNAL SURVEILLANCE CAPACITY BUILDING ACTIVITIES. TOGETHER, THESE ACTIVITIES WILL DETERMINE TO WHAT EXTENT OUR ACTIVE SURVEILLANCE OF BIRTH DEFECTS IS UNDER-ASCERTAINING CASES ACROSS MAJOR BIRTH DEFECTS, AS WELL AS THE INDIVIDUAL COMPLETENESS OF EXISTING TBDR CASES E.G., MISSING PROCEDURES OR PRENATAL DIAGNOSES. FUNDING WILL ALSO ENABLE THE TBDR TO ASSESS OUR READINESS TO EXCHANGE DATA WITH ELECTRONIC HEALTH SYSTEMS (EHRS). SECOND, WE WILL CONDUCT ACTIVITIES TO IMPROVE OUR SURVEILLANCE DATA QUALITY BY COLLABORATING WITH THE CDC TO DEVELOP, PILOT, AND EVALUATE DATA QUALITY INDICATORS; DEVELOPING A ROUTINE TO MONITOR DATA QUALITY USING INDICATORS; AND ASSESSING YEARLY PRACTICES AND EVENTS IMPACTING DATA QUALITY. THIRD, COLLABORATION IS A CORNERSTONE OF PUBLIC HEALTH; THEREFORE, WE PROPOSE STRATEGIES THAT WILL LEAD TO AN INCREASED UNDERSTANDING OF BIRTH DEFECTS EPIDEMIOLOGY THROUGH MULTI-STATE COLLABORATIONS; AND, AN EVALUATION OF MORTALITY AND SURVIVAL WITH A COST-EFFECTIVENESS ASSESSMENT OF T HE NATIONAL DEATH INDEX FOR SURVEILLANCE OF VITAL STATUS. FOURTH, WE WILL DEVELOP A PROTOCOL FOR CONTACTING FAMILIES OF INFANTS AND CHILDREN WITH BIRTH DEFECTS TO FIRST IDENTIFY FACILITATORS AND BARRIERS TO TRACKING CHILDREN PROSPECTIVELY TO SUPPORT THE PRIMARY AND SECONDARY PREVENTION OF BIRTH DEFECTS. MOREOVER, WE PROPOSE PRIMARY AND SECONDARY PREVENTION STRATEGIES FOR NEURAL TUBE DEFECT RECURRENCE PREVENTION AND CONGENITAL SYPHILIS PREVENTION, AS WELL AS STRATEGIES USING SURVEILLANCE DATA TO IDENTIFY AT-RISK POPULATIONS FOR PREVENTION EFFORTS. FINALLY, WE EXPAND OUR ACTIVITIES RELATED TO THE REFERRAL OF AFFECTED INDIVIDUALS TO MEDICAL AND EARLY INTERVENTION SERVICES.THE PROPOSED ACTIVITIES ARE EXPECTED TO RESULT IN THE FOLLOWING PROJECT PERIOD OUTCOMES: (1) STRENGTHENED SURVEILLANCE OF BIRTH DEFECTS; (2) IMPROVED QUALITY OF BIRTH DEFECTS SURVEILLANCE DATA; (3) INCREASED CONTRIBUTION OF MULTI-STATE DATA IN SCIENTIFIC UNDERSTANDING OF BIRTH DEFECTS EPIDEMIOLOGY; (4) INCREASED KNOWLEDGE OF THE PREVENTION OF BIRTH DEFECTS; (5) INCREASED ABILITY TO RAPIDLY RESPOND TO EMERGING THREATS TO MOTHERS AND BABIES; AND, (6) INCREASED ABILITY TO SUPPORT THE PRIMARY AND SECONDARY PREVENTION OF BIRTH DEFECTS.
OpenAlex ID: W4308952411