CDC - Sudden Infant Death Syndrome (SIDS) and Sudden, Unexpected Infant Death (SUID) - Reproductive Health

CDC - Sudden Infant Death Syndrome (SIDS) and Sudden, Unexpected Infant Death (SUID) - Reproductive Health

September 27, 2013

Each year, about 4,000 infants die suddenly and unexpectedly without an obvious cause of death. Improved national reporting and understanding of unexplained infant deaths can inform prevention strategies. Nine states now conduct enhanced child death reviews and participate in CDC’s Sudden Unexpected Infant Death Case Registry. Please share this email with others interested in improving public health practice through evidence-based strategies. A library of "Did You Know?" information is available online.

Sudden Unexpected Infant Death (SUID)

Sudden unexpected infant deaths are defined as deaths in infants less than 1 year of age that occur suddenly and unexpectedly, and whose cause of death are not immediately obvious prior to investigation.
Each year in the United States, about 4,000 infants die suddenly of no immediately, obvious cause. About half of these Sudden Unexpected Infant Deaths (SUID) are due to Sudden Infant Death Syndrome (SIDS), the leading cause of SUID and of all deaths among infants aged 1–12 months.
The three most frequently reported causes are SIDS, cause unknown, and accidental suffocation and strangulation in bed. In 2010, 2,063 deaths were reported as SIDS, 918 as cause unknown, and 629 as accidental suffocation and strangulation in bed.
CDC supports new recommendations issued by the American Academy of Pediatrics (AAP). These new recommendations aim to reduce the risk of infant death from SIDS as well as death from known sleep-related causes. Read the AAP fact sheet for more information.

Sudden Infant Death Syndrome (SIDS)

Sudden Infant Death Syndrome (SIDS) is defined as the sudden death of an infant less than 1 year of age that cannot be explained after a thorough investigation is conducted, including a complete autopsy, examination of the death scene, and review of the clinical history.
SIDS is the leading cause of death among infants aged 1–12 months, and is the third leading cause overall of infant mortality in the United States. Although the overall rate of SIDS in the United States has declined by more than 50% since 1990, rates for non-Hispanic black and American Indian/Alaska Native infants remain disproportionately higher than the rest of the population. Reducing the risk of SIDS remains an important public health priority.

Expanding Safe Infant Sleep Outreach
The U.S. national campaign to reduce the risk of SIDS has entered a new phase and will now include all sleep-related SUIDs. The campaign, which has been known as the Back to Sleep Campaign, has been renamed the Safe to Sleep Campaign.

Grand Rounds: Public Health Approaches to Reducing U.S. Infant Mortality This powerful session of Grand Rounds highlighted accomplishments and explored public health, clinical, and policy strategies to improve birth outcomes, with special consideration of high risk individuals, families, and communities.
For a medical examiner or coroner to determine the cause of the death, a thorough case investigation including examination of the death scene and a review of the infant’s clinical history must be conducted. A complete autopsy needs to be performed, ideally using information gathered from the scene investigation. Even when a thorough investigation is conducted, it may be difficult to separate SIDS from other types of sudden unexpected infant deaths, especially accidental suffocation in bed.
After a thorough case investigation, many of these sudden unexpected infant deaths may be explained. Poisoning, metabolic disorders, hyper or hypothermia, neglect and homicide, and suffocation are all explainable causes of SUID.

CDC’s Sudden Unexpected Infant Death Initiative

Since 1998, it appears that medical examiners and coroners are moving away from classifying deaths as SIDS and calling more deaths accidental suffocation or unknown cause, suggesting that diagnostic and reporting practices have changed. Inconsistent practices in investigation and cause-of-death determination hamper the ability to monitor national trends, ascertain risk factors, and design and evaluate programs to prevent these deaths.
As a response, CDC's Division of Reproductive Health’s (DRH) began the Sudden Unexpected Infant Death (SUID) Initiative. CDC and its partners began activities aimed at improving the investigation and reporting practices of Sudden Infant Death Syndrome (SIDS) and other SUID.
The CDC’s research on SUID and SIDS focuses on efforts to standardize and improve data collected at infant death scenes and to promote consistent classification and reporting of cause and manner of death for SUID cases. By improving national reporting of SUID, we aim to prevent SUIDs by using improved data to monitor trends and identify those at risk.

SUID Initiative Goals and Activities

The goals of the SUID Initiative are to—

1. Standardize and improve data collected at death scene.
2. Promote consistent classification and reporting of cause of death.
3. Improve national reporting of SUID.
4. Reduce SUID by using improved data to identify those at risk.

To accomplish these objectives, the CDC SUID Initiative collaborated with a number of organizations to—

1. Revise the 1996 Sudden Unexplained Infant Death Investigation Reporting Form (SUIDIRF).
2. Develop a training curriculum and materials for investigators of infant deaths.
3. Train medicolegal professionals and child advocates to conduct comprehensive infant death investigations.
4. Develop and implement a state-based SUID Case Registry.

Sudden Unexplained Infant Death Investigation Reporting Form

In 2003, CDC led activities aimed at revising the 1996 Sudden Unexplained Infant Death Investigation Reporting Form and Guidelines for the scene investigation, as well as actively educating and disseminating training materials on infant death scene investigations.
In March 2006, a revised reporting form known as the SUIDIRF was released. Along with the revised SUIDIRF, the CDC and partners developed training materials and conducted train-the-trainer regional academies for medical examiners, coroners, investigators, and child advocates across the United States.

Training Materials

When the CDC published the 1996 SUIDIRF, an evaluation suggested that more medicolegal professionals were likely to use the form if there were training to accompany the form (Hauck, 2001).
The SUID Initiative and collaborative partners created the following training materials:

• Sudden Unexplained Infant Death Investigation Curriculum.
• SUID Investigator’s Guidelines.

These training materials were used in conducting the five regional Sudden Unexplained Infant Death Investigation Training Academies.

Training Academies

As a means of disseminating Sudden Unexplained Infant Death Investigation training curriculum and materials, CDC conducted train-the-trainer academies in five U.S. regions from 2006 to 2008. These regional, multidisciplinary academies provided training for every state, as well as American Indian/Alaska Native teams. The academies produced more than 250 trainers, including medical examiners, coroners, law enforcement officers, child advocates, college faculty members, and medicolegal death scene investigators. Individuals participating in these academies were expected to conduct additional trainings at conferences, meetings, and courses in their respective states.
Topics covered at the training academy included how to—

• Complete the SUIDIRF.
• Interview families.
• Conduct death scene investigations including doll reenactments.
• Assess infant growth and development.

The SUIDIRF and training curriculum have been endorsed by several national organizations representing law enforcement, medical examiners, and coroners. More than 20,000 individuals have been trained, and many jurisdictions report that they are using the new SUIDIRF. View map SUIDI Training Academies.

SUID Surveillance System Feasibility Study

In 2007, CDC conducted a SUID surveillance feasibility study with seven states in collaboration with CDC’s National Violent Death Reporting System (NVDRS). NVDRS is a state-based surveillance system that links data from law enforcement, coroners and medical examiners, and vital statistics, etc. The feasibility study indicated that the most efficient way to develop a surveillance system would be to use the Child Death Review (CDR) system already in place. CDC partners suggested calling a future surveillance system the SUID Case Registry.

SUID Case Registry

Planning and Development

In 2008, partners with an interest in SIDS and SUID came together to discuss the logistics of the SUID Case Registry and Surveillance System. Partners supported the idea of building upon and enhance the CDR system, as it would strengthen multidisciplinary team reviews already in place and avoid duplication of efforts. Discussion also focused around creating a program model, delineating objectives, and questions that a SUID Case Registry could answer, and defining a limited set of variables.
The SUID Case Registry aims to generate public health surveillance information about SUID at the national, state, and local levels that is more detailed than what is currently available. Instead of creating an entirely new system, the SUID Case Registry enhances the National Center for Child Death Review program and their Case Reporting System.
The SUID Case Registry generates public health surveillance information that can comprehensively describe the circumstances and events surrounding SUID cases. This will allow researchers, medicolegal investigators, and program prevention planners to better understand characteristics associated with SUID, evaluate case investigation practices, and ultimately prevent infant deaths.
The SUID Case Registry’s objectives are to—

1. Create state-level surveillance systems that build upon Child Death Review activities.
2. Categorize SUID using standard definitions.
3. Monitor the incidence of different types of SUID and describe demographic and environmental factors.
4. Determine similarities and differences among SUID unexplained by autopsy.
5. Inform interventions and potentially save lives.

SUID Case Registry Pilot Program

In July 2009, five state participants were announced to receive funding for the SUID Case Registry Pilot Study as part of a cooperative agreement. Colorado, Georgia, Michigan, New Jersey, and New Mexico began entering information about SUID cases in January 2010. They use a modified version of the National Center for Child Death Review’s Web-based data collection system already place specific to SUID. An additional two states (New Hampshire and Minnesota) were added to the SUID Case Registry in July 2010.
Hauck F. Final Report: National Survey to Evaluate Use of the Sudden Unexplained Infant Death Investigation Report Form (SUIDI RF). Charlottesville, VA: University of Virginia Health System; 2001 (unpublished).

Sudden Unexpected Infant Death Case Registry

Background

To provide more comprehensive data to characterize Sudden Unexpected Infant Death (SUID) cases and to determine which factors in the sleep environment contribute to SUID cases, the Centers for Disease Control and Prevention (CDC), along with many public and private partners developed the SUID Case Registry pilot program.

SUID Case Registry State Grantees, 2012

States— Arizona, Colorado, Louisiana, Michigan, Minnesota, New Jersey, New Mexico, New Hampshire, Wisconsin.

Purpose

The Sudden Unexpected Infant Death Case Registry (SUID-CR) Pilot Program is a state-based surveillance system that supplements current vital statistics-based surveillance methods. The SUID-CR builds upon the National Center for Child Death Review (NCCDR) system funded by HRSA MCHB. The NCCDR system uses multidisciplinary child death review teams to review the circumstances of childhood deaths and uses findings to inform prevention strategies. Child death review teams, while functioning in all states but Idaho, have limited resources to review every SUID case within a state. Resources from the cooperative agreement promote collaborative partnerships between state health departments (especially vital statistics offices) and child death review teams, allowing for population-based state surveillance of SUID. The SUID-CR relies on multidisciplinary team review of several data sources including reports from death scene investigation, pathology, and medical records. This population-based SUID surveillance is critical to researchers, medicolegal investigators, and program planners who use this data to improve knowledge about SUID characteristics and risk factors, evaluate case investigation practices, and identify high risk groups to target interventions.

Grantee responsibilities include—

• Develop an efficient and timely method for case identification for all SUID deaths in the state. Grantees strive to identify and review cases within 3 months.
• Access the following required data sources for each case: death certificates, medical examiner or coroner records (e.g., Sudden Unexplained Infant Death Investigation Reporting Form or autopsy reports), and law enforcement records. Ideally grantees also have access to infant medical records since birth (including newborn screening results), birth certificates, mother’s obstetric records and any social service records that pertain to the case.
• Follow the CDC SUID-CR and NCCDR manual of procedures and protocols.
• Enter data into the NCCDR Web-based Case Reporting System.
• Implement a quality assurance plan to improve data quality and reduce missing data.
• Communicate progress to CDC via quarterly reports, conference calls, and an annual reverse site visit.

CDC in collaboration with the National Center for Child Death Review (NCCDR)

• Provides case definition, variable definitions, and a data dictionary.
• Conducts training in data standards and coding, data entry, data editing, and other quality assurance functions, record tracking, and transmission of data to CDC for quality assurance and analysis purposes.
• Maintains the NCCDR Case Reporting System.
• Reviews submitted data for quality and completeness, and provides feedback accordingly. Works with grantees to systematically resolve problems of missing or inaccurate data.
• Conducts site visits and offers technical assistance to solve problems related to data collection, case review, data entry, quality assurance, and evaluation.

Quality Improvement Goals

1. Reduce time delay between case review and data entry.
2. Encourage consistent and thorough use of the standard infant death scene investigation form by coroners and death scene investigators.
3. Develop specific tools to collect autopsy information from coroners and pathologists.
4. Supplement death scene information with EMS reports.
5. Improve Data Quality by implementing efforts to reduce missing or unknown information.

Case Registry Successes and Progress

The CDC SUID-CR pilot program set out to enhance state-based SUID information collection systems that can comprehensively describe the circumstances and events surrounding SUID cases. Tracking the number of cases identified and reviewed for each state has shown that grantees are meeting or exceeding the number of cases expected. Grantees also track cases as they go through review, data entry, and quality assurance. After the first six months of the program, it became apparent that this time line was slowing down at data entry. Grantees had focused efforts on identifying and reviewing cases within 90 days and now they are working to address the time lag in data entry, mostly at the local team level.
With only 9 months of data collection completed, there has already been evidence that the child death review process in SUID-CR pilot program states have enhanced their capacity to bring infant death investigation and autopsy information to the case review. Review teams are concentrating efforts to examine not only what was discovered during these investigations, but how these investigations were accomplished. This represents a shift in how these teams function and offers an opportunity to improve infant death investigation at the jurisdictional level.
By providing additional resources, the SUID-CR pilot program has improved data quality of all child death review cases, not merely SUID cases. This would not be accomplished without improved communication with the medicolegal professionals involved in infant and child death investigation. Reports from grantees also suggest that the SUID-CR pilot program has served to reinvigorate review teams with a sense of purpose and the program has brought new members to review teams. Finally, the SUID-CR pilot program also has created opportunities for state child death review staff to present local and state data to new audiences, including national conferences.
For more information view the child death review process.