Understanding three approaches to reporting sudden unexpected infant death in the USA.

INTRODUCTION: In the USA each year, there are approximately 3400 sudden unexpected infant (<1 year of age) deaths (SUID) which occur without an obvious cause before an investigation. SUID includes the causes of death (COD) undetermined/unknown, sleep-related suffocation/asphyxia and sudden infant death syndrome (SIDS); these are often called SUID subtypes. Three common ways SUID subtypes are grouped (SUID subtype groups) include International Classification of Diseases (ICD) Codes, SUID Case Registry Categories or Child Death Review (CDR)-Assigned Causes. These groups are often used to monitor SUID trends and characteristics at the local, state and national levels. We describe and compare the characteristics of these three SUID subtype groups. DISCUSSION: SUID subtype groups are distinct and not directly interchangeable. They vary in purpose, strengths, limitations, uses, history, data years available, population coverage, assigning entity, guidance documentation and information available to assign subtypes. CONCLUSION: Making informed decisions about which SUID subtype group to use is important for reporting statistics, increasing knowledge of SUID epidemiology and informing prevention strategies.

The Need for Improved Collaboration between Schools and Child Death Review Teams.

BACKGROUND: Schools are essential public health partners for safeguarding students' health. Child Death Review (CDR) is one public health activity where collaboration with schools is integral for developing strategies to prevent child death but the degree of collaboration is unknown. This study assessed school participation in CDR and the prevalence of school problems in reviewed child death cases, comparing non-suicide and suicide-related deaths. METHODS: Using the National Fatality Review-Case Reporting System, we created a dataset of school-aged children (5 to 20 years) whose death was reviewed from 2005 to 2017 and used frequencies, proportions, and chi-squared statistics on selected measures. RESULTS: Educational representatives infrequently participated in CDRs (24.9%). School records were rarely accessed for reviewed deaths (5.2%). Less than half (41.2%) of reviewed deaths had any school information and of these, 35.5% of children were indicated as having problems in school. Compared with non-suicide deaths, a larger proportion of suicide deaths had school representatives attend CDRs (28.4% vs 24.1%, P < .0001), and access to educational records (4.2% vs 9.2%, P < .0001). IMPLICATIONS: Efforts are needed to address potential barriers to systems integration, including state policies and federal educational privacy laws. CONCLUSIONS: School participation in CDRs is lacking for both suicide and non-suicide deaths.

Epidemiology of Sudden Death in a Population-Based Study of Infants and Children.

OBJECTIVE: To describe epidemiologic data from the Sudden Death in the Young (SDY) Case Registry. Understanding the scope of SDY may optimize prevention efforts. STUDY DESIGN: We analyzed sudden, unexpected deaths of infants (<365 days) and children (1-17 years) from a population-based registry of 8 states/jurisdictions in 2015 and 9 in 2016. Natural deaths and injury deaths from drowning, motor vehicle accident drivers, and infant suffocation were included; other injury deaths, homicide, suicide, intentional overdose, and terminal illness were excluded. Cases were categorized using a standardized algorithm. Descriptive statistics were used to characterize deaths, and mortality rates were calculated. RESULTS: Of 1319 cases identified, 92% had an autopsy. We removed incomplete cases, leaving 1132 analyzable deaths (889 infants, 243 children). The SDY rate for infants was 120/100 000 live births and for children was 1.9/100 000 children. Explained Cardiac rates were greater for infants (2.7/100 000 live births) than children (0.3/100 000 children). The pediatric Sudden Unexpected Death in Epilepsy (SUDEP) mortality rate was 0.2/100 000 live births and children. Blacks comprised 42% of infant and 43% of child deaths but only 23% of the population. In all ages, myocarditis/endocarditis was the most common Explained Cardiac cause; respiratory illness was the most common Explained Other cause. SDY occurred during activity in 13% of childhood cases. CONCLUSIONS: Prevention strategies include optimizing identification and treatment of respiratory and cardiac diseases.

U-Shaped Pillows and Sleep-Related Infant Deaths, United States, 2004-2015.

OBJECTIVES: To describe infant deaths where a u-shaped pillow was under or around an infant and to describe cases classified as Explained Suffocation. METHODS: We examined demographics and circumstances of 141 infant deaths during 2004-2015 in the US National Fatality Review Case Reporting System with u-shaped pillows in the sleep environment. RESULTS: Most infants were < 6 months old (92%), male (58%), non-Hispanic White (53%), and of the nine explained suffocation deaths, four occurred when the u-shaped pillow obstructed the infant's airway; five occurred when the infant rolled off the pillow and their airway was obstructed by another object. CONCLUSIONS FOR PRACTICE: Although infrequent, infant deaths with u-shaped pillows have occurred. Health care providers may include discussion of the importance of caregivers following infant product packaging precautions and warning labels for commonly used consumer products, such as u-shaped pillows in their advice to caregivers.

The Sudden Death in the Young Case Registry: Collaborating to Understand and Reduce Mortality.

Knowledge gaps persist about the incidence of and risk factors for sudden death in the young (SDY). The SDY Case Registry is a collaborative effort between the National Institutes of Health, the Centers for Disease Control and Prevention, and the Michigan Public Health Institute. Its goals are to: (1) describe the incidence of SDY in the United States by using population-based surveillance; (2) compile data from SDY cases to create a resource of information and DNA samples for research; (3) encourage standardized approaches to investigation, autopsy, and categorization of SDY cases; (4) develop partnerships between local, state, and federal stakeholders toward a common goal of understanding and preventing SDY; and (5) support families who have lost loved ones to SDY by providing resources on bereavement and medical evaluation of surviving family members. Built on existing Child Death Review programs and as an expansion of the Sudden Unexpected Infant Death Case Registry, the SDY Case Registry achieves its goals by identifying SDY cases, providing guidance to medical examiners/coroners in conducting comprehensive autopsies, evaluating cases through child death review and an advanced review by clinical specialists, and classifying cases according to a standardized algorithm. The SDY Case Registry also includes a process to obtain informed consent from next-of-kin to save DNA for research, banking, and, in some cases, diagnostic genetic testing. The SDY Case Registry will provide valuable incidence data and will enhance understanding of the characteristics of SDY cases to inform the development of targeted prevention efforts.

Cause-specific mortality among children and young adults with epilepsy: Results from the U.S. National Child Death Review Case Reporting System.

We investigated causes of death in children and young adults with epilepsy by using data from the U.S. National Child Death Review Case Reporting System (NCDR-CRS), a passive surveillance system composed of comprehensive information related to deaths reviewed by local child death review teams. Information on a total of 48,697 deaths in children and young adults 28days to 24years of age, including 551 deaths with epilepsy and 48,146 deaths without epilepsy, was collected from 2004 through 2012 in 32 states. In a proportionate mortality analysis by official manner of death, decedents with epilepsy had a significantly higher percentage of natural deaths but significantly lower percentages of deaths due to accidents, homicide, and undetermined causes compared with persons without epilepsy. With respect to underlying causes of death, decedents with epilepsy had significantly higher percentages of deaths due to drowning and most medical conditions including pneumonia and congenital anomalies but lower percentages of deaths due to asphyxia, weapon use, and unknown causes compared with decedents without epilepsy. The increased percentages of deaths due to pneumonia and drowning in children and young adults with epilepsy suggest preventive interventions including immunization and better instruction and monitoring before or during swimming. State-specific and national population-based mortality studies of children and young adults with epilepsy are recommended.