Building a NAS Surveillance Program: Partners for Engagement
local policies that may affect data sharing between programs as these relationships are built.
Perinatal Infectious Disease Surveillance
Conditions affecting neonates that have been historically reportable to public health include hepatitis B, hepatitis C, HIV, and Zika virus disease. Most health departments likely have longstanding Perinatal Hepatitis B, Hepatitis C, and Perinatal HIV surveillance programs that work to follow infected pregnant people through birth to ensure appropriate after birth interventions are implemented to prevent infection in the infants. These programs also will follow up with the infant for the first few months of life to track that laboratory testing occurs to verify the neonate’s immunity or infection status.
These groups, along with more recently implemented perinatal hepatitis C or Zika programs, may already have collaborations with birthing centers to receive reports of these neonates as they are born. Partnerships in this area can provide initial contacts or mechanisms for implementing case ascertainment with birthing hospitals, as well as an opportunity to potentially utilize the same case-based surveillance systems for tracking NAS cases. Similarly, CDC partners with some states and local jurisdictions on their Surveillance for Emerging Threats to Pregnant People and Infants Network (SET-NET), which identifies exposures during pregnancy and tracks longer term health outcomes. .
Maternal and Child Health
Often a separate section of the health department from infectious disease epidemiology, Maternal and Child Health programs work to improve birthing parent and child well-being, morbidity and mortality. A health department may have fetal/infant/child and/or maternal mortality review committees that meet to provide analysis of factors contributing to local fetal, infant, child or maternal deaths to make recommendations for how future deaths may be avoided. Substance use disorder is listed as one of the four circumstances that can be documented surrounding a pregnancy-related death. Thirty-six states are funded by CDC to support perinatal quality collaboratives (PQCs), networks of teams including health departments and external partners working to improve the quality of care for birthing parents and their babies.
The National Birth Defects Prevention Network (NBDPN) works with CDC and partners in state and local jurisdictions to conduct surveillance of birth defects across the US. Depending on the state, case ascertainment and surveillance methods may vary, and the NBDPN compiles a list of state contacts and surveillance information. This is another area where a case-based surveillance system already exists and may be able to assist with building a space for tracking of NAS cases. .
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Opioid Task Force/Substance Use Task Force
Local jurisdictions may have cross-agency opioid task forces already in place to work in the area of opioid overdose prevention, treatment, and education. Members may include local health departments, county or city government, law enforcement, substance use treatment, behavioral health, and local hospitals. Keeping track of the work being done by these organizations can help with understanding local resources available to assist pregnant or postpartum people with substance use disorders.
Opioid Surveillance and Injury and Violence Prevention Programs
CDC funds state and local Overdose Data to Action (OD2A) programs to collect data on fatal and non-fatal drug overdoses and strengthen the ability of jurisdictions to provide actionable data to prevention partners. In addition to overdoses, data collected can include toxicological testing of drug products as well as linkage to and retention in care. Jurisdictional injury and violence prevention programs can house a jurisdiction’s opioid surveillance work, but also work to implement prevention efforts for a wide range of topics that can include suicide, intimate partner violence, and child abuse or neglect. These health department programs may have important contacts with community partners helpful in NAS surveillance or care referral and can also provide timely information on current and emerging substance use trends in the area.
Syndromic Surveillance
Within a health department, syndromic surveillance is often used to inform substance use and overdose surveillance. Syndromic surveillance captures near real time information from emergency departments within the jurisdiction, including data elements such as chief complaint and discharge diagnosis, and is used for timely monitoring of disease trends. A jurisdiction may be able to work with their local syndromic surveillance program to develop queries for use in case ascertainment of NAS
Birthing Center/Hospital Partners
In jurisdictions where NAS is reportable by providers, establishing a strong relationship with the staff at birthing facilities/hospitals within the jurisdiction is essential. Initially hospital leadership and legal teams may need to be involved to review and provide support for the reporting based on jurisdictional legal authority. On a more regular basis it is necessary to connect with the hospital staff that will be responsible for the act of reporting. Templates and best practices for creating these types of communications are available on the Communications to Strengthen Surveillance page.
Partners in Care/Referral
Each state or territory has Early Intervention programs to provide assistance to families whose children have or are at risk for developmental delays or disabilities. The eligibility for early intervention services may vary by state. Some states may consider substance exposed newborns or neonates with an NAS diagnosis as eligible for early intervention services.
The Health Resources and Services Administration (HRSA) supports the Maternal, Infant, and Early Childhood Home Visiting (MIECHV) Program and the Healthy Start Program. The Healthy Start Program focuses on reducing infant deaths and funding is awarded at a local level. The MIECHV Program is awarded to states and territories and focuses on a longer period of early childhood development.
The U.S. Department of Health and Human Services (HHS), Administration for Children & Families funds Head Start programs across the country, including Early Head Start programs for children from birth to age 3, and Head Start preschool for children ages 3-5. These programs have a goal of kids being ready to succeed in school and can assist with early learning and development, offering parental support and connecting families to federal assistance, and engaging parents to advocate for their children. This administration also funds Temporary Assistance for Needy Families (TANF), which allows states and territories to operate programs designed to help low-income families achieve economic self-sufficiency.
The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) provides federal grants to states for supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum people, and to infants and children up to age 5 who are found to be at nutritional risk. This program may be operationalized at various locations throughout a
community, including local health departments, and program eligibility is reliant on income. A similar program, the Supplemental Nutrition Assistance Program (SNAP) is available to reduce food insecurity in people not eligible for WIC, also dependent on income.
Local areas may have support groups for parents, or for people with substance use disorder, that can provide peer support. Staff working in community health in the above programs, or social workers within delivery facilities, may have knowledge of or connections with these groups.
Medicaid and the Children’s Health Insurance Program (CHIP) are joint federal/state programs that provide health insurance for pregnant people, children, and potentially other low-income individuals. Eligibility varies by state and can include considerations for household income, family size, age, disability, and other factors. Medicaid may be able to assist with transportation for medical appointments.
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Local Chapters of National Organizations
The American Academy of Pediatrics, American College of Obstetricians and Gynecologists, and American Society of Addiction Medicine are national professional organizations for clinicians that have worked to put out comprehensive guidance and resources on NAS and substance use during pregnancy based on the expertise of their members. These groups have local chapters that provide advocacy at a local/state level. These groups may represent a different path to connecting with providers within your jurisdiction, learning about resources already present within communities, and collaborating on surveillance efforts for NAS
Continue The Guide
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