Improve Identification and Data Collection for NAS

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Introductory Paragraph

One of the biggest challenges of addressing NAS is that it is not consistently identified, and collection of data and reporting is inconsistent. A standardized data collection and surveillance among on 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)[1] published: Strengthening Health Agencies' Neonatal Abstinence Syndrome Surveillance through consensus data & Standards in September of 2021. The standards include consideration for health agencies to improve current NAS surveillance.[2]

Included in the ASTHO key considerations are key components for agencies that are working to improve NAS data collection and surveillance.

  • Build a registry for NAS.
  • Understand the landscape of NAS surveillance capacity.
  • Achieve consensus through a data element submission tool process to inform standards around

Improve data sharing between public health and Medicaid agencies with a goal of expanding their capacity to use NAS data

Build a Registry for NAS in order to provide collaboration in data collected and provide standard information across the country.

Steps to build a registry include:[3]

  • Identify a 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.

Understand the landscape for how state and territory health agencies collect NAS data and conduct surveillance as well as identify gaps in standards.

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. Standardized definitions of data as well as standardized diagnosis codes will improve reporting, collaboration, strategies and interventions for NAS.

Relevant Research

Positive Predictive Value of Administrative Data for Neonatal Abstinence Syndrome[4]

Standardization of State Definitions for Neonatal Abstinence Syndrome Surveillance and the Opioid Crisis[5]

Registries for Evaluating Patient Outcomes: A User's Guide[6]

Impactful Federal, State, and Local Policies

National Drug Control Strategy 2022[7] Includes consolidated database and a developing a data plan.

Indiana State Department of Health In 2014, because of the high rate of opioid prescriptions, the Indiana General Assembly charged the Indiana State Department of Health (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. As of 2016, 26 of 89 Indiana Birthing Hospitals are taking 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.[8]

The Indiana State Department of Health (ISDH) established a Task Force which defined a standard clinical definition of Neonatal Abstinence Syndrome

  • The infant must:
  • Be symptomatic
  • Have two or three consecutive modified Finnegan scores equal to or greater than a total of 24
  • And have one of the following:
    • A positive toxicology test OR
    • A maternal history with a positive verbal screen or toxicology test

Protecting Our Infants Act[9]The Protecting Our Infants Act of 2015 (POIA) became law on November 25, 2015. The Act (Public Law 114-91) addressed problems related to prenatal opioid exposure called for HHS to review planning and coordination of HHS activities related to prenatal opioid exposure and neonatal abstinence syndrome (NAS), and to study and develop recommendations for the prevention, identification, and treatment of NAS as well as the treatment of opioid use disorder (OUD) in pregnant women.

Available Tools and Resources

Strengthening Health Agencies Neonatal Abstinence Syndrome Surveillance Through Consensus vs. Driven Data Standards and Practices[10]The standards includes key considerations for health agencies that wish to improve NAS data collection and surveillance through the development of a registry.

World Health Organization Guidelines for the identification and management of substance use and substance use disorders in pregnancy - Includes methods of data collection and analysis.[11]

Council of State & Territorial Epidemiologists NAS Environmental Scan including data sources, methods, surveillance and reporting.[12]

Data-Sharing Considerations for State Public Health Departments and Medicaid Agencies-A Technical Assistance Brief[13]

EMI Advisors Neonatal Abstinence Syndrome (NAS) Data Element Tool (DET) Dashboarding[14]

Promising Practices

The Florida Perinatal Quality Collaborative- NAS Initiative: Key drivers of change[15] A review of the data collection process.

Missouri Hospital Association Neonatal Abstinence Syndrome: Guidance to Improve Clinical Documentation and Data Capture- Identifies gaps, challenges and solutions for data capture and documentation.[16]

Public Health Neonatal Abstinence Syndrome Reporting Registry The Kentucky Public Health Neonatal Abstinence Syndrome (NAS) Reporting Registry received fewer reports of Neonatal Abstinence Syndrome (NAS) in 2019[17]

Georgia Department of Public Health Division of Health Promotion NAS Annual Surveillance Report – 2017[18]