Improve Identification and Data Collection for NAS

Introductory Paragraph

One of the biggest challenges of addressing Neonatal Abstinence Syndrome (NAS) is that it is not consistently identified, and collection of data and reporting is inconsistent. Standardized data collection and surveillance in all states and territories would improve the ability to guide public health strategies and interventions.

Key Information

The Association of State and Territorial Health Officials (ASTHO) has published guidance for standards for health agencies to improve current NAS surveillance. The document titled, Strengthening Health Agencies' Neonatal Abstinence Syndrome Surveillance through Consensus Data and Standards, includes the following key components for agencies to improve NAS data collection and surveillance:

• Understand the landscape of NAS surveillance capacity.
• Enhance utility of Medicaid protocols
• Build a registry for NAS.
• Achieve consensus

Understand the Landscape. This involves documentation of how state and territory health agencies currently collect NAS data and conduct surveillance. This first step advanced in the ASTHO report is foundational to the identification of gaps in standards. Nationally standardized definitions of data and standardized diagnosis codes will improve collaboration and NAS reporting and interventions. In 2019, the Council of State and Territorial Epidemiologists (CSTE) proposed a nationally standardized case definition to capture surveillance measures across jurisdictions to inform clinical and public health treatment and prevention efforts. Some of the states surveyed in the ASTHO report are using these standards while other states are using ICD-9 (779.5) and ICD-10 (P96.1) codes.

Enhance Utility of Medicaid Protocols. This involves expanding Medicaid’s capacity to use NAS data. It also involves improvement of data sharing between public health agencies and Medicaid.

Build a Registry for NAS. This will promote collaboration in collecting data and provide standard information across the country. Steps to build a registry include:

• Identify the purpose.
• Determine if a registry is an appropriate means to achieve the purpose.
• Identify key stakeholders and how they have used or interacted with registries for other conditions.
• Assess feasibility.
• Build a registry team.
• Establish a governance and oversight plan.
• Consider the scope and rigor needed.
• Define the core data set, patient outcomes, and target population (data element submission process).
• Develop a study plan or protocol.
• Develop a project plan.

Achieve Consensus. A tool for data element submission will advance the process of informing the development of national standards.

Relevant Research

• This report by the Council of State and Territorial Epidemiologists summarizes an environmental scan that was performed on NAS data sources, methods, surveillance and reporting.

• This article documents a study in which the predictive value of an algorithm was used to identify cases of NAS using administrative Medicaid claims data.

• This article summarizes a study which was performed using publicly available information regarding NAS surveillance activities and definitions. Since current clinical case definitions use different combinations of clinician-observed signs of withdrawal and evidence of perinatal substance exposure, there is discordance in diagnosis codes used in surveillance definitions. This summary provides an understanding of the different clinical case and surveillance definitions which are used across the United States.

Impactful Federal, State, and Local Policies

Protecting Our Infants Act of 2015 (POIA) addresses problems related to prenatal opioid exposure. It called for HHS to review planning and coordination of HHS activities related to prenatal opioid exposure and NAS and to study and develop recommendations for the prevention, identification, and treatment of NAS as well as the treatment of opioid use disorder in pregnant people.

The 2022 National Drug Control Strategy calls for developing a data plan and a consolidated database. One major source of administrative data within the data strategy includes the Healthcare Cost and Utilization Project (HCUP) on records of emergency department admissions and inpatient hospital stays from participating states compiled by the Agency for Healthcare Quality and Research (AHRQ). It provide data on drug overdoses and NAS.

Indiana State Department of Health (ISDH). In response to the high rate of opioid prescriptions, the Indiana General Assembly charged ISDH to: develop a standard clinical definition of NAS and a standardized process of identifying it, identify the resources hospitals need to do this, and then establish a voluntary pilot program with hospitals to implement this standardized NAS identification. In 2016, 26 of 89 Indiana Birthing Hospitals took part in this pilot screening program. ISDH noted that universal screening in a non-punitive environment would allow us to understand the true prevalence of perinatal substance use and NAS. ISDH established a task force which provided a standard clinical definition of NAS, stating that the infant must be symptomatic, have two or three consecutive modified Finnegan scores equal to or greater than a total of 24, and either a positive toxicology test OR a maternal history with a positive verbal screen or toxicology test.

Available Tools and Resources

SAFE Project. See the wiki titled "Improve Data Sharing, Analysis, and Monitoring" for more detailed information on the improvement of data collection/analysis to fight the substance use crisis.

The World Health Organization has published "Guidelines for the Identification and Management of Substance Use and Substance Use Disorders in Pregnancy." It includes methods of data collection and analysis.

The Center for Health Care Strategies (CHCS) published "Data-Sharing Considerations for State Public Health Departments and Medicaid Agencies." This is a useful technical assistance brief that offers considerations, tips, and best practices to facilitate data sharing to support Medicaid-public health partnerships. It provides examples of jurisdictions that have set up effective data-sharing arrangements.

EMI Advisors provides a dashboard for NAS which includes a data element tool (DET).

Registries for Evaluating Patient Outcomes: A User's Guide. While not specific to NAS, this guide is useful to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes.

Promising Practices

The Florida Perinatal Quality Collaborative. The Maternal Opioid Recovery Effort (MORE) implemented an initiative on NAS that reflects a successful data collection process and key drivers of change.

Kentucky established the Public Health Neonatal Abstinence Syndrome Reporting Registry. Their work documents prevention strategies and provides evidence of declining rates of NAS.

Missouri Hospital Association. After the identification of a possible gap in the ability to accurately measure prevalence of NAS in Missouri, five strategies were developed to improve data capture of NAS and related maternal substance use by practitioners, clinical documentation specialists, and medical coding specialists.

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