Evaluation of State-Mandated Reporting of Neonatal Abstinence Syndrome — Six States, 2013–2017

From 2004 to 2014, the incidence of neonatal abstinence syndrome (NAS) in the United States increased 433%, from 1.5 to 8.0 per 1,000 hospital births. The latest national data from 2014 indicate that one baby was born with signs of NAS every 15 minutes in the United States (1). NAS is a drug withdrawal syndrome that most commonly occurs among infants after in utero exposure to opioids, although other substances have also been associated with NAS. Prenatal opioid exposure has also been associated with poor fetal growth, preterm birth, stillbirth, and possible specific birth defects (2–5). NAS surveillance has often depended on hospital discharge data, which historically underestimate the incidence of NAS and are not available in real time, thus limiting states’ ability to quickly direct public health resources (6,7). This evaluation focused on six states with state laws implementing required NAS case reporting for public health surveillance during 2013–2017 and reviews implementation of the laws, state officials’ reports of data quality before and after laws were passed, and advantages and challenges of legally mandating NAS reporting for public health surveillance in the absence of a national case definition. Using standardized search terms in an online legal research database, laws in six states mandating reporting of NAS from medical facilities to state health departments (SHDs) or from SHDs to a state legislative body were identified. SHD officials in these six states completed a questionnaire followed by a semistructured telephone interview to clarify open-text responses from the questionnaire. Variability was found in the type and number of surveillance data elements reported and in how states used NAS surveillance data. Following implementation, five states with identified laws reported receiving NAS case reports within 30 days of diagnosis. Mandated NAS case reporting allowed SHDs to quantify the incidence of NAS in their states and to inform programs and services. This information might be useful to states considering implementing mandatory NAS surveillance.

To identify states with laws mandating reporting of NAS for public health surveillance, relevant laws (statutes and regulations) were identified using Westlaw,* an online legal research database, on January 3, 2018. Search terms were limited to identify statutes and regulations that explicitly named “neonatal abstinence syndrome” in states’ disease and conditions reporting laws. The search string was applied to all 50 states and the District of Columbia. Laws were cross-referenced with states’ disease reporting lists on SHD websites. Six states (Arizona, Florida, Georgia, Kentucky, Tennessee, and Virginia) were identified as having laws requiring reporting of NAS from medical facilities to the SHD, from the SHD to a state legislative body, or both. SHD officials in these six states completed a 28-item questionnaire, and a semistructured telephone interview (focusing on development of statute, implementation, data collection and quality) was conducted with one interviewee per state. Interviewees were identified via outreach to SHD officials requesting SHD points of contact for, or designated experts on, NAS surveillance. Questionnaire and interview data were analyzed for similarities and differences in NAS reporting criteria, data elements and utilization, reporting system, required resources, and barriers to case reporting.

A review of the six states’ laws indicated variation in states’ reporting frameworks (Table 1). Laws in Arizona, Florida, Georgia, Kentucky, and Virginia require medical providers and medical facilities to report cases of NAS to their respective SHDs. In Tennessee, the health commissioner has the authority to add new diseases to the reportable disease list without a new statute or regulation. Using this authority, NAS was made reportable from medical facilities to the Tennessee SHD without a new law in 2013; therefore, the 2013 implementation is not included in this review of NAS laws. However, Tennessee’s 2017 law, which explicitly names “neonatal abstinence syndrome,” was captured in the Westlaw search; therefore, the 2017 law requiring the SHD to report NAS cases to the Tennessee state legislature was included in this analysis. Georgia’s 2017 law also requires any medical provider who has diagnosed an infant with NAS to report the case to the SHD and the SHD to report cases to the state legislature. Georgia’s and Virginia’s laws define NAS, whereas the other four states’ laws do not. Arizona’s law specifies data elements to be collected. State laws vary in the required time frame for case reporting from “at the time of diagnosis” to within 6 months after diagnosis.

The questionnaire and telephone interviews were completed during March–May 2018. All six states identify reportable NAS cases based on a clinical diagnosis of NAS by a medical provider (Table 2). Georgia’s SHD also requires that infants with positive toxicology results be reported to the SHD as a NAS case even in the absence of a clinical diagnosis of NAS by a medical provider. Including positive infant toxicology results in Georgia’s NAS case definition allows the state to determine the types of substances infants are exposed to prenatally that might cause signs of withdrawal postnatally. Documented maternal opioid use is not a criterion for case reporting in any of the six states. None of these states reported administration of specific care or pharmacologic treatment to an infant as a criterion for case reporting. Health officials in Kentucky commented that they do not define cases based on an abstinence scoring tool (8,9) because of potential subjective differences in how providers quantify symptoms as part of the scoring method. During interviews, state officials consistently noted that mandated reporting of NAS was enacted to 1) gain a more precise understanding of the incidence of NAS in their state, 2) better characterize the impact of the opioid crisis in their state, 3) identify specific communities or geographic areas more severely affected by opioids and NAS, and 4) inform programs and services.

Although specific approaches varied, most of the surveyed states implemented electronic reporting of NAS, which was reported as an advantage by state officials. Another resource advantage noted by state officials in Arizona and Georgia was adding NAS case reporting to existing electronic disease surveillance systems. The Tennessee and Virginia SHDs established new electronic NAS case reporting systems, and the Kentucky SHD used paper-based case report forms with plans to transition to an electronic reporting system. Florida’s passive electronic case reporting via administrative data sets did not require any changes.

Georgia, Kentucky, Tennessee, and Virginia reported that education of providers and hospital staff members on NAS case reporting requirements is one of the more resource-intensive activities related to NAS case reporting (Table 2). Arizona reported collecting missing data and training staff members on data entry and record review as challenges that require additional staffing resources. Other challenges reported by state officials include staff member turnover at hospitals and birthing centers, which could result in gaps in reporting, and the requirement that all facilities that provide care to an infant with NAS have to report the case, which poses the potential for duplicate reporting if an infant is transferred to another facility.

The numbers and types of data elements required for case reporting differed by state (Table 2). All six states collect infant demographics; Florida, Georgia, Kentucky, and Tennessee also collect maternal demographics. In addition, surveillance data were used differently by the states. Arizona, Georgia, Kentucky, and Tennessee publicly report deidentified data to inform partners and stakeholders of NAS incidence. These four states also share data with other state and local agencies to inform community assessments, planning, program development, and to provide opportunities for intervention. Arizona reported that NAS surveillance improves the state’s understanding of the proportion of NAS cases attributable to medically supervised opioid treatment during pregnancy, including pain management and medication-assisted treatment for opioid use disorder, and provides an opportunity to improve treatment strategies for pregnant women with opioid use disorder. Florida links infant and maternal hospital discharge data to connect women who have had two or more opioid-exposed pregnancies to treatment services; other states use data to promote and develop supportive care and integrated services for families.

Acknowledgments

Margaret A. Honein, PhD, National Center on Birth Defects and Developmental Disabilities, CDC; José T. Montero, MD, Center for State, Tribal, Local, and Territorial Support, CDC; Heather Lake-Burger, MS, MPH, Florida Department of Health; Diane Woolard, PhD, Virginia Department of Health; Henrietta Bada, MD, Kentucky Department for Public Health; Erica Weis, MPH, Arizona Department of Health Services.

Corresponding author: Jennita Reefhuis, [email protected]; 404-498-3917.

¹Office of the Secretary, U.S. Department of Health and Human Services; ²National Center on Birth Defects and Developmental Disabilities, CDC; ³Cherokee Nation Assurance, Arlington, Virginia; ⁴Center for State, Tribal, Local, and Territorial Support, CDC; ⁵Kentucky Department for Public Health; ⁶Florida Department of Health; ⁷Tennessee State Department of Health; ⁸Virginia Department of Health; ⁹Arizona State Department of Health; ¹⁰Georgia Department of Public Health; ¹¹National Center for Chronic Disease Prevention and Health Promotion, CDC; ¹²Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee; ¹³Carter Consulting, Inc., Atlanta, Georgia; ¹⁴National Center for Injury Prevention and Control, CDC

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Abbreviations: AZ = Arizona; FL = Florida; GA = Georgia; KY = Kentucky; N/A = not applicable; TN = Tennessee; VA = Virginia.
* Defines providers broadly to include coroners and medical examiners. Facilities are also defined broadly to include hospitals, birthing centers, and various healthcare facilities. Individual states might have laws with additional mandatory reporters. For example, see GA. Code Ann. § 31–12–2, in which “any other person or entity the department determines has knowledge of diagnosis or health outcomes related, directly or indirectly” must also report NAS.
^† FL. Admin. Code Ann. r. 64D-3.029(3), FN 18. Within 6 months, hospitals must “report each case of neonatal abstinence syndrome occurring in an infant admitted to the hospital.” However, “[i]f a hospital reports a case of neonatal abstinence syndrome to the Agency for Health Care Administration in its inpatient discharge data report, pursuant to Chapter 59E-7, F.A.C., then it need not comply with the reporting requirements of subsection 64D-3.029(1), F.A.C.”
^§ GA. Code Ann. § 31–12–2. “’[N]eonatal abstinence syndrome’ means a group of physical problems that occur in a newborn infant who was exposed to addictive illegal or prescription drugs while in the mother’s womb.”
^¶ The Georgia Department of Health must report NAS case load and NAS incidence to the state legislature on a yearly basis.
** GA. Code Ann. § 31–12–2 indicates that reporting shall take place “in a manner and at such times as may be prescribed.” The health department has used this authority to require a 30-day time frame for reporting.
^†† See also Tenn. Comp. R. and Regs. 1200–14–01-.02 (2010). This law does not use the terminology “neonatal abstinence syndrome” but does authorize the health commissioner to add diseases to the reportable disease list, which requires providers to report to the state health department. Tennessee added NAS to its reportable disease list in 2013.
^§§ See also VA Code Ann. § 32.1–35 (West 2018). This law does not use the terminology “neonatal abstinence syndrome” but does authorize the board to add diseases to the reportable disease list. NAS is on the reportable disease list in Virginia.
^¶¶ Virginia’s legislature enacted an uncodified act (SB1323/HB1467) Acts 2017, mL. 185 and 280, requiring the Board of Health to adopt regulation to include NAS as a reportable disease.
*** 12 VA Admin Code § 5–90–80. “[A] condition characterized by clinical signs of withdrawal from exposure to prescribed or illicit drugs.”

Abbreviations: AZ = Arizona; FL = Florida; GA = Georgia; KY = Kentucky; TN = Tennessee; VA = Virginia.
* During interviews the benefits of having a clinical diagnosis by a medical provider as part of the case definition were not specifically discussed.
^† In Georgia, infants with a clinical diagnosis of NAS or a positive toxicology result should be reported to the state health department.
^§ Toxicology results do not provide information on whether a prescribed substance was used as prescribed or diverted.