Purpose of CDR Reporting
The individual case review of a child’s death can often catalyze local and state action to prevent other deaths. It is important, however, to systematically collect data and report on the findings from your reviews over time. It is also important to compare your review findings with your child mortality data from vital statistics and other official records.
When data from a series or cluster of case reviews are analyzed over time, significant risk factors or patterns in child injury and safety can be identified. The collection of findings from case reviews and the subsequent reporting out on these findings can help:
- Local teams gain support for local interventions.
- State teams review local findings to identify trends, major risk factors and to develop recommendations and action plans for state policy and practice improvements.
- State teams match review findings with vital records and other sources of mortality data to identify gaps in the reporting of deaths.
- State and local teams use the findings as a quality assurance tool for their review processes.
- Local teams and states use the reports to demonstrate the effectiveness of their reviews and advocate for funding and support for their CDR program.
- National groups use state and local CDR findings for national policy and practice changes.
All but two states use some type of reporting system to track data on child death and child death reviews. States use these case reports to develop annual reports to state legislators, governors, state agencies and the public. As of January 2012, forty-three states were publishing annual Child Death Review reports with findings and recommendations; twenty-four of these have legislation in place requiring the annual reports.
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Individual Case Report
The individual case report is completed on all deaths reviewed by a team. It should include information on the child, caregivers, supervisors, circumstances of the event leading to the death and team findings related to services and prevention. When completed following case reviews, tabulations of and analysis of the data from the case reports will provide:
- Comprehensive information on the child, family and supervisor.
- Risk factors in the child deaths reviewed.
- Descriptions of the investigation activities conducted as a result of this death.
- Descriptions of the services provided or needed as a result of the deaths reviewed, and the review teams recommendations for new services or referrals.
- The team’s recommendations and actions taken for the prevention of other deaths.
- Factors affecting the quality of the case review meetings.
You should ensure that the legislation and/or rules regulating your CDR process allow for the collection of a case report. Some states do not allow for case-identifiable data to be collected or shared at the state level, so the case report will need to have these identifiers removed.
The case report can be partially completed prior to the case review. Your team coordinator may provide these forms to team members prior to the meeting, but should be sure to take the necessary steps to protect confidentiality. The case report should be completed during or shortly after a review. The data elements in the form can be helpful in guiding a discussion. However, the case report tool should not be the focus of the review, nor inhibit the flow of discussion. The person responsible for the case report should enter data from the report into a predesigned database for child death review. This data can then be tabulated and analyzed for specific time periods, e.g. annually, for inclusion in a report on CDR for either local or state distribution.
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The Child Death Review Case Reporting System
The Child Death Review Case Reporting System (CRS) is a standardized case report tool available to states through the National Center for the Review and Prevention of Child Deaths. Forty-three states now use the CRS.
One aspect of the Child Death Review Case Reporting System, a web-based application, is the individual case report. The system allows local and state users to enter case data, findings, and review team recommendations; access and download their data; and download standardized reports via the Internet. Users are able to complete data analysis and develop their own reports. With data use agreements between states, users may be able to compare their data with other states and with national compilations.
- Child Death Review Case Report Form (PDF file)
- The Child Death Review Case Reporting System: Data Dictionary (PDF file)
Using CDR Data for Annual Reports or Other Reports
Compiling and disseminating CDR case findings into reports is an effective means of educating policy makers, agency staff and the general public about key risks factors and opportunities for prevention. Most of these compilations are done as annual reports or as two- or three-year summaries of findings. Some states also publish cause of death-specific reports, for example a report specific to suicide deaths in the jurisdiction, but the most common report is the annual report. Annual reports can include the following:
- Executive Summary that includes child mortality data, CDR findings, prevention recommendations and an overview of the CDR process.
- Summary of child mortality data, including numbers and rates for all child deaths.
- Summary of child death review team findings for all deaths by key indicators collected in the case report tool.
- Child mortality data including numbers and rates and child death review findings by specific manners and causes.
We also suggest including:
- Mortality data by year and trends over ten years if possible
- A general description of the cause of death, relative to national data, key risk factors, known proven interventions to prevent the deaths, and resources available for more information
- Breakdown of deaths reviewed by age, race, ethnicity and gender
- Key risk factors identified through the review process
- Actions taken as a result of the reviews locally or at the state level
- Recommendations for actions by state and local leaders
- Recommendations for parents and caregivers
Appendices could include a list of figures and tables; number of cases reviewed and reported by teams; total number of deaths among state residents, ages 0-18, by county of residence and age group; and a list of review team coordinators.
Preparing the report on CDR findings can be difficult and time consuming, especially for persons not accustomed to data analysis systems. Public health departments often have data analysis staff and epidemiologists who may be able to assist in the preparation of the report. Caution should be taken when presenting both mortality data from vital statistics and child death review data. Often these two sources of data cannot be compared one-to-one for a number of reasons: the year of death and year of review differ; there may be children in one or the other data set who are not residents of the jurisdiction being reported on; and there may be significant delays in obtaining mortality data, as compared to CDR data.
Despite these caveats, it is important to present both mortality data and CDR data. By doing so, you will be able to estimate the percent of all child deaths in your reporting area that are being reviewed; you may be able to identify types of deaths that are underreported through the vital statistics coding system (child abuse fatalities for example;) and you will have a more complete understanding of all child deaths in your reporting area.
It is important to have a plan in place for disseminating your reports and for following up on the recommendations in the report. Many CDR state programs have been effective in distributing the reports to their governor, state legislators, state executive offices, state agency administrators, state child advocates, the press and local CDR team members. You should work with your state agency to develop a press release and events to publicize the report’s release.
Samples of state reports are available in the State Spotlight section for each state.