Death Scene Investigation and Autopsy Practices in Sudden Unexpected Infant Deaths.

OBJECTIVE: To describe and compare sudden unexpected infant death (SUID) investigations among states participating in the SUID Case Registry from 2010 through 2012. STUDY DESIGN: We analyzed observational data from 770 SUID cases identified and entered into the National Child Death Review Case Reporting System. We examined data on autopsy and death scene investigation (DSI) components, including key information about the infant sleep environment. We calculated the percentage of components that were complete, incomplete, and missing/unknown. RESULTS: Most cases (98%) had a DSI. The DSI components most frequently reported as done were the narrative description of the circumstances (90%; range, 85%-99%), and witness interviews (88%, range, 85%-98%). Critical information about 10 infant sleep environment components was available for 85% of cases for all states combined. All 770 cases had an autopsy performed. The autopsy components most frequently reported as done were histology, microbiology, and other pathology (98%; range, 94%-100%) and toxicology (97%; range, 94%-100%). CONCLUSIONS: This study serves as a baseline to understand the scope of infant death investigations in selected states. Standardized and comprehensive DSI and autopsy practices across jurisdictions and states may increase knowledge about SUID etiology and also lead to an improved understanding of the cause-specific SUID risk and protective factors. Additionally, these results demonstrate practices in the field showing what is feasible in these select states. We encourage pediatricians, forensic pathologists, and other medicolegal experts to use these findings to inform system changes and improvements in DSI and autopsy practices and SUID prevention efforts.

Cardiovascular deaths in children: general overview from the National Center for the Review and Prevention of Child Deaths.

BACKGROUND: Cardiovascular conditions rank sixth in causes of death in 1- to 19-year-olds. Our study is the first analysis of the cardiovascular death data set from the National Center for the Review and Prevention of Child Deaths, which provides the only systematic collection of cardiovascular deaths in children. METHODS: We developed an analytical data set from the National Center for the Review and Prevention of Child Deaths database for cardiovascular deaths in children 0 to 21 years old, reviewing 1,098 cases from 2005 to 2009 in 16 states who agreed to participate. RESULTS: Cardiovascular cases were aged 4.8 ± 6.6 years; 55.3%, ≤1 year; 24.6%, ≥10 years; male, 58%; white, 70.5%; black, 22.3%; Hispanic, 19.5%. Prior conditions were present in 48.5%: congenital heart disease, 23%; cardiomyopathies, 4.6%; arrhythmia, 1.7%; and congestive heart failure, 1.6%. Deaths occurred most frequently in urban settings, 49.2%; and in the hospital, 40.4%; home, 26.1%; or at school/work/sports, 4.8%. Emergency medical services were not evenly distributed with differences by age, race, ethnicity, and area. Autopsies (40.4%) occurred more often in those >10 years old (odds ratio [OR] 2.9), blacks (OR 1.6), or in those who died at school/work/sports (OR 3.9). The most common cardiovascular causes of death included congenital heart disease, 40.8%; arrhythmias, 27.1%; cardiomyopathy, 11.8%; myocarditis, 4.6%; congestive heart failure, 3.6%; and coronary artery anomalies, 2.2%. CONCLUSIONS: Our study identified differences in causes and frequencies of cardiovascular deaths by age, race, and ethnicity. Prevention of death may be impacted by knowledge of prior conditions, emergency plans, automated external defibrillator programs, bystander cardiopulmonary resuscitation education, and by a registry for all cardiovascular deaths in children.

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.

Development of a data set of national cardiovascular deaths in the young.

BACKGROUND: The only systematic collection of cardiovascular (CV) deaths in children resides in the database derived from the Case Reporting System of the National Center for the Review and Prevention of Child Deaths (NCRPCD). We describe the process used to develop an analytical data set to inform our understanding of CV deaths in children from this database. METHODS: Twenty-five states reporting natural CV deaths during 2005 to 2009 were contacted. Sixteen states agreed to participate. Cases experienced a natural CV death and were 0 to 21 years. Challenges to building a final analytical data set were identified and included reclassification, recategorization, and the development of new variables from existing data, including an algorithm to identify sudden cardiac deaths. RESULTS: The final data set included 1,098 cases. Missing data comprised a mean of 41.7% for most key variables. Cardiovascular cases were aged 4.8 ± 6.6 years; 55.3%, ≤1 year, 24.6%, ≥10 years; male, 58%; white, 70.5%; black, 22.3%; and Hispanic, 19.5%. CONCLUSIONS: This manuscript provides the first description of the natural CV death data set from the NCRPCD. We identify potential beneficial changes in the NCRPCD Case Reporting System and review process. Analysis of these data will help determine characteristics of CV deaths and allow the assessment of risk factors that can be used to prevent CV death in the young. The rate of CV death can be lowered using knowledge of associations that can be gleaned from this robust database. Best practices for prevention hold promise for a future with fewer deaths that will need to be reviewed.

Sudden unexpected infant deaths: sleep environment and circumstances.

OBJECTIVES: We sought to describe the characteristics and sleep circumstances of infants who die suddenly and unexpectedly and to examine similarities and differences in risk factors among infants whose deaths are classified as resulting from sudden infant death syndrome (SIDS), suffocation, or undetermined causes. METHODS: We used 2005 to 2008 data from 9 US states to assess 3136 sleep-related sudden unexpected infant deaths (SUIDs). RESULTS: Only 25% of infants were sleeping in a crib or on their back when found; 70% were on a surface not intended for infant sleep (e.g., adult bed). Importantly, 64% of infants were sharing a sleep surface, and almost half of these infants were sleeping with an adult. Infants whose deaths were classified as suffocation or undetermined cause were significantly more likely than were infants whose deaths were classified as SIDS to be found on a surface not intended for infant sleep and to be sharing that sleep surface. CONCLUSIONS: We identified modifiable sleep environment risk factors in a large proportion of the SUIDs assessed in this study. Our results make an important contribution to the mounting evidence that sleep environment hazards contribute to SUIDs.

The US National Child Death review case reporting system.

The National Child Death Review Case Reporting System (NCDR-CRS) was developed in the USA to provide child death review teams with a simple method for capturing, analysing, and reporting on the full set of information shared at a child death or serious injury review. The NCDR-CRS is a web based system currently being used by 35 of the 50 US states. This article describes the purpose, features, limitations, and strengths of the system. It describes current and planned efforts for the dissemination of the data to inform and catalyse local, state, and national efforts to keep children safe, healthy, and alive.

Assessment of caregiver responsibility in unintentional child injury deaths: challenges for injury prevention.

Most unintentional injury deaths among young children result from inadequate supervision or failure by caregivers to protect the child from potential hazards. Determining whether inadequate supervision or failure to protect could be classified as child neglect is a component of child death review (CDR) in most states. However, establishing that an unintentional injury death was neglect related can be challenging as differing definitions, lack of standards regarding supervision, and changing norms make consensus difficult. The purpose of this study was to assess CDR team members' categorisation of the extent to which unintentional injury deaths were neglect related. CDR team members were surveyed and asked to classify 20 vignettes-presented in 10 pairs-that described the circumstances of unintentional injury deaths among children. Vignette pairs differed by an attribute that might affect classification, such as poverty or intent. Categories for classifying vignettes were: (1) caregiver not responsible/not neglect related; (2) some caregiver responsibility/somewhat neglect related; (3) caregiver responsible /definitely neglect related. CDR team members from five states (287) completed surveys. Respondents assigned the child's caregiver at least some responsibility for the death in 18 vignettes (90%). A majority of respondents classified the caregiver as definitely responsible for the child's death in eight vignettes (40%). This study documents attributes that influence CDR team members' decisions when assessing caregiver responsibility in unintentional injury deaths, including supervision, intent, failure to use safety devices, and a pattern of previous neglectful behaviour. The findings offer insight for incorporating injury prevention into CDR more effectively.

Public health surveillance of fatal child maltreatment: analysis of 3 state programs.

OBJECTIVES: We sought to describe approaches to surveillance of fatal child maltreatment and to identify options for improving case ascertainment. METHODS: Three states--California, Michigan, and Rhode Island--used multiple data sources for surveillance. Potential cases were identified, operational definitions were applied, and the number of maltreatment deaths was determined. RESULTS: These programs identified 258 maltreatment deaths in California, 192 in Michigan, and 60 in Rhode Island. Corresponding maltreatment fatality rates ranged from 2.5 per 100,000 population in Michigan to 8.8 in Rhode Island. Most deaths were identified by child death review teams in Rhode Island (98%), Uniform Crime Reports in California (56%), and child welfare agency data in Michigan (44%). Compared with the total number of cases identified, child welfare agency (the official source for maltreatment reports) and death certificate data underascertain child maltreatment deaths by 55% to 76% and 80% to 90%, respectively. In all 3 states, more than 90% of cases ascertained could be identified by combining 2 data sources. CONCLUSIONS: No single data source was adequate for thorough surveillance of fatal child maltreatment, but combining just 2 sources substantially increased case ascertainment. The child death review team process may be the most promising surveillance approach.

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.

Child maltreatment deaths in the U.S. National Child Death Review Case Reporting System.

Comprehensive reviews of child death are increasingly conducted throughout the world, although limited information is available about how this information is systematically used to prevent future deaths. To address this need, we used cases from 2005 to 2009 in the U.S. National Child Death Review Case Reporting System to compare child and offender characteristics and to link that information with actions taken or recommended by review teams. Child, caretaker, and offender characteristics, and outcomes were compared to team responses, and findings were compared to published case series. Among 49,947 child deaths from 23 states entered into the Case Reporting System during the study period, there were 2,285 cases in which child maltreatment caused or contributed to fatality. Over one-half had neglect identified as the maltreatment, and 30% had abusive head trauma. Several child and offender characteristics were associated with specific maltreatment subtypes, and child death review teams recommended and/or planned several activities in their communities. Case characteristics were similar to those published in other reports of child maltreatment deaths. Teams implemented 109 actions or strategies after their review, and we found that aggregating information from child death reviews offers important insights into understanding and preventing future deaths. The National Child Death Review Case Reporting System contains information about a large population which confirms and expands our knowledge about child maltreatment deaths and which can be used by communities for future action.

Using capture-recapture methods to better ascertain the incidence of fatal child maltreatment.

OBJECTIVES: To (1) test the use of capture-recapture methods to estimate the total number of child maltreatment deaths in a single state using information from death certificates, child welfare reports, child death review teams, and uniform crime reports; and to (2) compare these estimates to the number of maltreatment deaths identified through an in-depth "gold standard" review. METHODS: Child maltreatment deaths were identified in four existing administrative data sources: (1) death reports in our state vital statistics (DC); (2) child death review team reports (CDR); (3) homicide reports filed by our state police agency as uniform crime report (UCR) supplements for the FBI; and (4) abstracted reports of a minor's death from our state child protective services (CPS) agency. Capture-recapture pair-wise and pooled comparisons were then applied to estimate the numbers of abuse and total maltreatment deaths and were compared to the number of cases identified by independent case review. RESULTS: There were a total of 194 child maltreatment deaths in Michigan during 2000-2001 with 66 due to physical abuse. Capture-recapture analysis estimated the mean number of total child maltreatment deaths as 101.02 (95%CI=92.52, 109.53), with abuse deaths of 64.55 (60.85, 68.25). Most pair-wise and pooled comparisons worked equally well for abuse deaths, but estimates for total child maltreatment deaths were low. CONCLUSIONS: Capture-recapture methods applied to existing administrative datasets produced accurate estimates of child abuse deaths but were not useful in producing reliable estimates of total child maltreatment deaths due to undercounting neglect-related deaths in all existing administrative data sets. The underlying assumptions for capture-recapture methods were not met for neglect deaths. Local and/or state teams conducting ongoing intensive case review may yet remain the best way to identify the total number of child maltreatment deaths. PRACTICE IMPLICATIONS: Capture-recapture methods allow for more accurate estimation of the true number of child physical abuse deaths than does using single existing sources of child fatality information, but deaths from causes other than abuse are undercounted. Child maltreatment fatality surveillance requires a systematic process and standard criteria for identifying cases of maltreatment, particularly neglect-related child deaths.