Initial Communication
When a jurisdiction first gains the legal authority to require reporting of NAS by clinical providers, providing guidance and education on reporting and legal authority to healthcare organizations and providers is essential for case ascertainment. First, healthcare organizations, particularly birthing facilities and hospitals, should be alerted to the regulations requiring NAS reporting. This may be in the form of a “Dear Provider” letter
that outlines the legislative authority of the jurisdiction for data collection. This letter will likely end up in the legal department of a healthcare organization and should be vetted by your agency’s legal department. A separate letter can be provided with more details on NAS and how to report that is targeted to the staff within the facilities that will be doing the reporting, such as staff overseeing a delivery or neonatal care unit. This more detailed letter can give a brief overview of NAS, the reporting rule, and then define the expectations for reporting (start date, timeliness, reporting mechanism, etc.).
Consider sending regular reminders to the contacts within facilities that report to encourage reporting. Either of the letters described above can be utilized as a general reminder of existing regulatory requirements for reporting. Reminders at the end of each reporting period (e.g. biweekly or monthly) might improve reporting timeliness, and a staffing change that may affect NAS reporting can be identified more quickly so further education can be provided to new staff. Depending on jurisdictional resources, holding routine (bi-annual or quarterly) meetings with reporters from birthing facilities to ensure everyone is on the same page and go over any questions or concerns. If there is no set reporting cadence, annual reminders are a good way to make sure healthcare organizations (HCOs) and providers have updated materials.
Reporting Tracking
It can be helpful to maintain a website for providers seeking information on NAS reporting that clearly outlines all reporting requirements. If requiring reporting on a biweekly or monthly cadence, a calendar that shows the reporting dates can be a useful tool for a visual reminder for reporters. This calendar can be sent in any initial communications with reporters as well as in annual reporting reminders. Depending on the frequency of the cadence, consider sending reminder emails to key staff at HCOs when a reporting date is nearing.
If utilizing an online form or PDF template for reporting, it is good to make the reporting tool(s) easy to find on a website. It can be helpful to also provide reporters an instructional document that outlines exactly how to use the tool and defines all data elements being requested.
Data Sharing and Transparency
Even with regulatory authority to collect patient data on neonatal abstinence syndrome there can be legal considerations as to how and what data are collected, stored, and displayed. Work with your legal department to understand if a Data Use Agreement or Memorandum of Understanding is required for data collection of this information from providers/HCOs. To promote trust between reporters and jurisdictions, in initial communications with providers/HCOs it may be helpful to outline the potential uses of the data including any reporting to the federal level. Describe how the data will be de-identified before display, as well as outlining policies that contribute to privacy protection (e.g. suppression of low numbers). If the jurisdiction is able to refer families to services through this reporting mechanism it may be helpful to outline the types of assistance being made available to the families. Ensuring that reporters have access to and awareness of the final public data can strengthen relationships and increase commitment to reporting. In both the initial communications with reporters and any annual reminders, be very clear about if and how providers can access final public data on NAS. This may simply include promoting awareness of a public display of NAS data within a report or website or disseminating any
publications from the data.
Guidance for Letter Creation
Guidance is available for how to create these letters as well as a template provider FAQ sheet.
Information to be included in a notification of legislation letter:
This type of letter can be sent as a first notification to healthcare organizations (HCOs) and providers when legal authority for NAS reporting is initially established within a jurisdiction or utilized to reinforce existing regulatory authority and encourage cooperation from reporters. This letter provides a higher-level legal summary for the administration and legal team within a facility, and ideally should be reviewed by the jurisdiction’s legal department prior to use.
– Highly Recommended
o The date the legislation goes into effect.
o The specific name and sections of legislation that require the reporting of infants with NAS.
o The agency name and department responsible for receiving the reports of infants with NAS.
o A relatively brief but specific outline of what kind of patient the hospital should be reporting to the agency. Details can be
provided in a more specific document for staff responsible for reporting (see below).
Examples:
“any neonate (defined as <28 days old) who has been clinically diagnosed as having Neonatal Abstinence Syndrome”
“all confirmed NAS/NOWS cases of neonates (birth up to 28 days of life)”
– Optional
o Link to a factsheet with more details about reporting NAS including the how to report, the reporting schedule, what the
surveillance data will be used for, and why it is important.
o Link to the reporting mechanism.
Information to be included in a Provider or Healthcare Organization letter:
This type of letter can be sent upon initial contact with a provider or HCO as well as in annual reporting reminders. An annual reporting reminder letter can provide updates on any changes in reporting requirements as well as describe policy changes that may impact reporting or diagnosis of NAS. A more detailed template outlining suggestions for creation of this letter is available here.
– Highly Recommended
o The agency name and department responsible for receiving the reports of infants with NAS.
o A brief description of NAS and the public health importance of surveillance.
Consider including jurisdictional-specific information that may build provider trust and likelihood of participation, such as
how the data will be used or displayed.
o Describe what is required from the provider, such as:
What to report – A brief but clear description of what testing results, diagnostic codes or clinical signs and symptoms
would trigger a report.
How to report – Include a link to the reporting mechanism, such as web form or template case report form.
When to report – Clearly state the date the reporting requirements go into effect (if new) and reporting requirement timeliness. Consider utilizing a calendar to visualize reporting dates if a regular cadence is required.
– Optional
o Describe how public health surveillance reporting relates to jurisdictional reporting required by the Child Abuse Prevention and Treatment Act (CAPTA).
Will one report suffice?
Will the agencies be in contact with one another?
o Outline the effects of any jurisdictional policies that may impact reporting or diagnosis of NAS.
o If the reporting will connect the family to support services, it can be helpful to outline what connections will be made.
o Give the specific name and sections of legislation that require the reporting of infants with NAS
Template FAQ Sheet for Providers
The below sections provide template language and considerations for what jurisdictions can include as a part of a more detailed letter for providers describing how reporting functions for public health surveillance of NAS.
NAS versus NOWS
Neonatal abstinence syndrome (NAS) is a constellation of signs of withdrawal from substances or prescribed medications that occurs in a neonate
following in utero exposure, primarily to opioids, benzodiazepines, and barbiturates. Similarly, another commonly identified syndrome is Neonatal Opioid Withdrawal Syndrome (NOWS), which represents a subset of NAS cases exposed specifically to opioids (alone or in combination with other substances). Within public health surveillance it has been determined to be important to focus on NAS rather than limiting surveillance to NOWS to monitor the effects of polysubstance use and how new or emerging substances may contribute to neonates experiencing withdrawal.
What to Report
(Insert information on the reporting requirements by providers within your jurisdiction. Ensure any instructions given align with your jurisdictional legal authority. If using this template to create an annual reporting reminder, highlight any changes that have occurred in what to report since last year. An example for what this may look like according to the case ascertainment criteria within 23-MCH-01 is below.)
This type of letter can be sent as a first notification to healthcare organizations (HCOs) and providers when legal authority for NAS reporting is initially established within a jurisdiction or utilized to reinforce existing regulatory authority and encourage cooperation from reporters. This letter provides a higher-level legal summary for the administration and legal team within a facility, and ideally should be reviewed by the jurisdiction’s legal department prior to use.
Any neonates less than 28 days of age, who are hospitalized to admitted to a pediatric residential recovery center, should be reported if they meet any of the following criteria:
• The neonate has a diagnosis or chief complaint of NAS, or is exhibiting at least two clinical signs* of NAS AND there is evidence of in
utero substance exposure. Evidence of in utero substance exposure includes:
o Documentation of substance use by the birthing parent during the current pregnancy.
o Positive neonatal laboratory test results for an opiate, benzodiazepine, barbiturate, or other substance
o Positive laboratory test results from the birthing parent collected within the current pregnancy through one day post-delivery for an opiate, benzodiazepine, barbiturate, or other substance
• Laboratories testing neonatal specimens collected in the emergency department, hospital, or residential pediatric recovery center during
the neonatal period: any detected or positive results for opioids, benzodiazepines, or barbiturates, or their metabolites in a clinical
specimen by any laboratory test.
• Laboratories testing specimens from the birthing parent (as part of routine care) collected in the emergency department or hospital, or laboratory reports from prenatal clinic or substance use disorder treatment clinic included in the birthing parent’s delivery record within the current pregnancy through one day postdelivery: any detected or positive results for opioids, benzodiazepines, or barbiturates, or their metabolites in a clinical specimen by any laboratory test.
*Clinical signs of NAS include the following: high-pitched cry, irritability or inability to console (e.g., excessive crying), hypertonia (increased muscle tone), tremors, myoclonus, hyperactive Moro reflex, poor sleep, alterations in feeding (e.g., hyperphagia, poor feeding), seizures, excoriation, excessive sucking, excessive sneezing, nasal congestion/stuffiness, frequent yawning, fever, cutaneous mottling, sweating, feeding intolerance (e.g., excessive regurgitation and/or vomiting), loose or watery stools, tachypnea or respiratory rate > 60/min, respiratory distress or
nasal flaring
How to Report
(Insert information on how your jurisdiction would like to receive these reports from providers, as well as the timeframe for how timely or often new cases should be reported. It may be helpful to include a list of the variables needed within the report. Link to any web reporting form or PDF case report form with instructions for how to fill it out. If using this template to create an annual reporting reminder, highlight any changes that
have occurred in how to report or the required variables since last year.)
Public Health Surveillance and CAPTA and CARA
The Child Abuse Prevention and Treatment Act (CAPTA) and the Comprehensive Addiction and Recovery Act (CARA) amendment are intended to promote better health practices for birthing parents with substance use disorder and their children.
(Insert information on how state regulations and policies stemming from CAPTA and CARA may interact or be distinct from public health surveillance. Does public health reporting align with or is it separate from any form of reporting required based on these regulations? Does public health work with other agencies involved in reporting of these neonates due to CAPTA/CARA?) .
