Displaying NAS Data
Standardized surveillance of neonatal abstinence syndrome (NAS) aids in the understanding of incidence and burden of disease, as well as supports the connection of families with public health or clinical services and provides some insight into the magnitude of need for those services. Sharing of the data collected is an important aspect of public health communication, and care must be taken to ensure privacy is maintained and data are interpreted accurately. If local policy allows, consider making the data or charts/figures available for download.
What to Display
The initial Neonatal Abstinence Syndrome Standardized Case Definition Position Statement (19-MCH-01) recommends that only cases meeting confirmed or probable case status be included in the NAS case counts released outside of the public health agency. The Update to the Neonatal Abstinence Syndrome Standardized Case Definition (23-MCH-01) updates this recommendation to only cases meeting the confirmed case status, however this is because the probable case status has been removed in the updated case definition and those cases now also meet the confirmed case status. The following recommendations are applicable to jurisdictions conducting either Tier 1 or Tier 2 surveillance. Small number estimates should be suppressed in accordance with local privacy policies. Accounting for small number estimates may also influence the timeframe and geographical breakdown chosen for reporting NAS cases. NAS counts are commonly displayed on a per year timeframe and often displayed as a rate per live births (e.g., cases per 1,000 or 10,000 live births). A denominator of overall births from vital records can be utilized that is limited to the appropriate geographic area and timeframe represented by the numerator. Consider what variables could be used for stratification of the data. Be aware of any stratification that introduces counts small enough to require suppression. Any stratification of NAS data is optional depending on what variables are collected within a jurisdiction and how the data will be
used. Some examples of variables that may be used for stratification include:
Health Equity: Race/Ethnicity, Insurance Type, Birthing Parent’s Age, Birthing Parent’s Education, Birthing Parent Marital Status, County/Region, Living Conditions of Birthing Parent During Pregnancy (In their home, In someone else’s home, In temporary housing,
Outside, In a treatment facility, In a shelter, etc.), Social Vulnerability Index, Minority Health Social Vulnerability Index, Healthy Places Index
• Birth Outcome: Gestational Age, Birthweight, Method of Delivery, Length of Stay, Infant Discharge Disposition (Where was the infant
discharged to?), Birth Location (Facility vs Intended Homebirth vs Unintended Homebirth)
• Prenatal Care: Was Prenatal Care Initiated, Kotelchuck Index (Adequacy of Prenatal Care Utilization Index)
• An important variable for public health includes distinction between birthing parents with untreated opioid use disorder (OUD) or another substance use disorder vs birthing parents with OUD who are on medication for treatment of OUD (including methadone or
buprenorphine) vs birthing parents receiving opioid, benzodiazepine, or barbiturate therapy for a chronic disease or condition. The results of increased public health attention on NAS may not lower the case rates, but progress may be seen in a shift from exposures due
to untreated versus treated substance use disorders.
It can add helpful context to add comparison rates for all births in the state to the stratified data. For instance, the rates of NAS incidence in births by insurance type may not hold much meaning unless it is compared to the rates of births by insurance type overall.
Describe What’s Displayed
For the audience who may not understand NAS, it is important to provide a short definition of NAS and the public health importance of surveillance. For any public facing web dashboards, it may be useful to link to resources for providers or patients for further NAS education.
Surveillance of NAS is a piece of a public health approach to addressing substance use during pregnancy, and involves complex considerations for pregnant people, infants and their families to avoid further stigmatization. When displaying NAS data it may be important to address these considerations and advocate for an ethical public health approach to provide preventions efforts, treatment, and recovery care to the birthing
parent-infant dyad. Ensure that the audience for the data is easily able to interpret how it was collected and what population it represents. For example, here are some questions that someone should easily be able to answer when looking at the data:
• What geographic area do these data represent? Is it state level data or city/county level?
• What timeframe is covered by these data?
• How did the jurisdiction come up with these counts? Did hospitals report their NAS cases or are these counts from an administrative database? If hospitals- did all facilities within the area shown participate in reporting? If an administrative database, what data source
was used?
• What does it take for an infant to be counted as a case? Are there criteria that would exclude an infant from the counts? Describe or link
to the case definition used.
•When were these data last updated? Is there a lag time in data collection?
• Are there small counts that are being suppressed? What are the suppression criteria?
If the data are shown over time, such as displaying multiple years, it is important to highlight any changes to surveillance methods or coding practices that may influence the potential trends seen. If surveillance has been conducted using ICD10CM codes, it may be valuable to point out the switch from ICD9CM to ICD10CM. If utilizing the CSTE position statement for surveillance, note when your jurisdiction switches from 19-MCH-01 to 23-MCH-01. If applicable, it may be helpful to note if your jurisdiction has conducted recent outreach with birthing facilities that may have increased their participation in reporting cases.
Describe Limitations
As with all surveillance data, there are limitations to what can be interpreted from the collection of NAS data. Explaining the limitations is an important facet of displaying surveillance data. Here is an example template of language regarding these limitations:
“There is variability in diagnosis, laboratory testing, and reporting both within and across facilities as well as between jurisdictions/states due to bias in who receives testing or diagnosis as well as potential consequences for families in settings where policies require their use for punitive social and legal practices. Reporting requirements and surveillance practices vary greatly between jurisdictions and counts may not be comparable.”
Finally, it is important to express why the surveillance data displayed are useful despite these limitations. Describing how your jurisdiction is able to use these data for public health action can provide justification for the surveillance efforts and build trust providers to enhance participation in reporting.
