Improve Identification and Data Collection for NAS

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.

Key Information

The Association of State and Territorial Health Officials (ASTHO) 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.

Included in the ASTHO key considerations: includes key considerations for health agencies that wish to improve NAS data collection and surveillance through the development of a registry. These considerations are further described with consideration for health agencies’ current capacity to collect data elements, leverage activities in the field that strengthen NAS surveillance, and apply a common case definition. 1. Build a registry for NAS. 2. Understand the landscape of NAS surveillance capacity. 3. Achieve consensus through a data element submission tool process to inform standards around NAS data elements and case definitions. 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 While there are immense variations in the scope, size, and resources required to build registries, this method of data collection and exchange between partners represents one avenue for collecting standard information across the country. Registries maintain flexibility in the amount of data collected, operation duration, resources required to maintain operation, and target populations, which can be expanded based on new information or research.1 Steps to build a registry include: 1. Identify a purpose. 2. Determine if a registry is an appropriate means to achieve the purpose. 3. Identify key stakeholders and how they have used or interacted with registries for other conditions. 4. Assess feasibility. 5. Build a registry team. 6. Establish a governance and oversight plan. 7. Consider the scope and rigor needed. 8. Define the core data set, patient outcomes, and target population (data element submission process). 9. Develop a study plan or protocol. 10. Develop a project plan. UNDERSTAND THE LANDSCAPE OF NAS SURVEILLANCE CAPACITY ASTHO conducted an environmental scan from fall 2020 to spring 2021 to better understand how state and territorial health agencies conduct NAS surveillance and what gaps remain related to capacity, feasibility, and data standards. Information was sourced from literature and guidance documents prepared by several national organizations and associations. ASTHO also conducted focus groups in March 2021 to understand what states were referencing for NAS case definitions and data elements. While Table 1 does not capture the full range of data elements a state or territorial health agency collects, it does represent the data elements most commonly found in the literature and/or used by these agencies. The definitions referenced include both informally and formally published definition, where one was documented. This table provides a starting point for creating a core or minimum data set. Unique data elements not included in this table will make up a larger NAS compendium and be discussed for relevance Strengthening Health Agencies’ Neonatal Abstinence Syndrome Surveillance 3 and utility during the consensus-driven approach that comprises the data element submission tool process.

Relevant Research

Positive Predictive Value of Administrative Data for Neonatal Abstinence Syndrome

Impactful Federal, State, and Local Policies

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. 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

Available Tools and Resources

Strengthening Health Agencies Neonatal Abstinence Syndrome Surveillance Through Consensus vs. Driven Data Standards and PracticesThe 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.

Promising Practices

The Florida Perinatal Quality Collaborative- NAS Initiative: Key drivers of change 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.

Sources

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