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Guidelines for Death Scene Investigation of Sudden, Unexplained Infant Deaths: Recommendations of the Interagency Panel on Sudden Infant Death Synd
Participating Organizations U.S. Department of Health and Human Services, Interagency Panel on Sudden Infant Death Syndrome
Centers for Disease Control and Prevention
Consumer Product Safety Commission
Food and Drug Administration
Health Resources and Services Administration
(Maternal and Child Health Bureau)
Indian Health Service
National Institutes of Health
National Center on Child Abuse and Neglect
U.S. Department of Defense
U.S. Department of Justice
Participants Workshop on Guidelines for Scene Investigation
of Sudden Unexplained Infant Deaths
Randall C. Alexander, M.D. American Academy of Pediatrics Iowa City, IA
Susan Alpert, Ph.D., M.D. Center for Devices and Radiologic Health Food and Drug Administration Rockville, MD
James D. Beisner, M.P.P.A. Chief Deputy Coroner, Orange County Santa Anna, CA
Manon A. Boudreault, M.P.H. Consumer Product Safety Commission Bethesda, MD
Karen H. Bourdon, M.A. National Institute of Mental Health National Institutes of Health Rockville, MD
Kevin E. Bove, M.D. Society for Pediatric Pathology Cincinnati, OH
Denise R. Brooks, M.S., R.R.T. Institute for Child Survival, Inc. Acworth, GA
Joye Maureen Carter, M.D. Association of State and Territorial Health Officials Washington, DC
Gilberto F. Chavez, M.D., M.P.H. California Department of Health Services Sacramento, CA
Olivia J. Cowdrill, M.S. National SIDS Resource Center McLean, VA
Dale P. Dirks Health and Medicine Council of Washington Washington, DC
Mary C. Dufour, M.D., M.P.H. National Institute on Alcohol Abuse and Alcoholism National Institutes of Health Rockville, MD
Mary Fran Ernst Medical Examiner's Office St. Louis, MO
Sally Flanzer, Ph.D. National Center on Child Abuse and Neglect Washington, DC
Laurie Foudin, Ph.D. National Institute on Alcohol Abuse and Alcoholism National Institutes of Health Rockville, MD
Richard C. Froede, M.D. Forensic Pathology Committee College of American Pathologists Tucson, AZ
George A. Gay National Center for Health Statistics CDC Hyattsville, MD
Michael S. Gluck, D.Sc. Center for Devices and Radiologic Health Food and Drug Administration Rockville, MD
Joseph J. Halka, M.D. Forensic Pathologist/Medical Examiner Santa Anna, CA
Randy L. Hanzlick, M.D. National Center for Environmental Health CDC Atlanta, GA
Fern R. Hauck, M.D., M.S. Department of Family Medicine Loyola University Medical Center Maywood, IL
Brenda D. Hayes, D.S.W, M.P.H. Office of Minority Health CDC Atlanta, GA
Howard J. Hoffman, M.A. National Institute of Deafness and Other Communicable Disorders National Institutes of Health Bethesda, MD
Solomon Iyasu, M.B.B.S., M.P.H. National Center for Chronic Disease Prevention and Health Promotion CDC Atlanta, GA
Coryl LaRue Jones, Ph.D. National Institute on Drug Abuse National Institutes of Health Rockville, MD
John L. Kiely, Ph.D. National Center for Health Statistics CDC Hyattsville, MD
Michele Kiely, Dr.P.H. Health Resources and Services Administration Maternal and Child Health Bureau Rockville, MD
Robert H. Kirschner, M.D. Office of the Medical Examiner Cook County Chicago, IL
Gus H. Kolilus State Technical Assistance Team Jefferson City, MO
Chris L. Krogh, M.D., M.P.H. Indian Health Service Rapid City, SD
Henry F. Krous, M.D. Department of Pathology Childrens' Hospital San Diego, CA
Helen Lerner, R.N.C., Ed.D. National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
David W. Lloyd, J.D. National Center on Child Abuse and Neglect Washington, DC
Marian F. MacDorman, Ph.D. National Center for Health Statistics CDC Hyattsville, MD
Mary E. McClain, R.N., M.S. Association of SIDS Program Professionals Boston, MA
Patricia J. McFeeley, M.D. Office of the Medical Investigator Albuquerque, NM
Brenda G. Meister U.S. Department of Justice Washington, DC
Thomas L. Moran SIDS Alliance Columbia, MD
Ortwin A. Narr, M.A. Police Executive Research Forum Washington, DC
F. Sam Notzon, Ph.D. National Center for Health Statistics CDC Hyattsville, MD
Thomas J. O'Loughlin International Association of Chiefs of Police Alexandria, VA
Paul E. Phillips Consumer Product Safety Commission Ft. Lauderdale, FL
Ted R. Quasala Bureau of Indian Affairs Washington, DC
Brad B. Randall, M.D. Coroner/Forensic Pathologist Sioux Falls, SD
Diane L. Rowley, M.D., M.P.H. National Center for Chronic Disease Prevention and Health Promotion CDC Atlanta, GA
Kenneth C. Schoendorf, M.D., M.P.H. National Center for Health Statistics CDC Hyattsville, MD
John E. Smialek, M.D. Chief Medical Examiner Baltimore, MD
JanaLee L. Sponberg, D.A.E. U.S. Department of Defense Arlington, VA
Alfred Steinschneider, M.D., Ph.D. The American Sudden Infant Death Syndrome Institute Atlanta, GA
William Q. Sturner, M.D. American Academy of Forensic Sciences Little Rock, AR
Marie Valdes-Dapena, M.D. Department of Pathology University of Miami School of Medicine Miami, FL
Peter C. Van Dyck, M.D., M.P.H. Health Resources and Services Administration Maternal and Child Health Bureau Rockville, MD
Susan Wells American Bar Association Center on Children and the Law Chicago, IL
Marian Willinger, Ph.D. National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
Kevin J. Winn, M.D. The American Sudden Infant Death Syndrome Institute Atlanta, GA
Louise M. Wulff, Sc.D. American College of Obstetrics and Gynecology Washington, DC
The following CDC staff prepared this report:
Solomon Iyasu, M.B.B.S., M.P.H.
Diane L. Rowley, M.D., M.P.H.
Division of Reproductive Health National Center for Chronic Disease Prevention and Health Promotion
Randy L. Hanzlick, M.D.
Division of Environmental Hazards and Health Effects
National Center for Environmental Health
in collaboration with
Marian Willinger, Ph.D.
National Institute of Child Health and Human Development
National Institutes of Health
Because no uniform procedure has been developed for collecting and evaluating information on sudden, unexplained infant deaths (SUIDs) in the United States, the U.S. Senate and U.S. House of Representatives recommended in 1992 that the U.S Department of Health and Human Services Interagency Panel on Sudden Infant Death Syndrome (SIDS) establish a standard scene investigation protocol for SUIDs. Two members of the panel, the Division of Reproductive Health of CDC and the National Institute for Child Health and Human Development of the National Institutes of Health, convened a workshop in July 1993 to gather information and ideas to use in developing such a protocol. Workshop participants, who included consultants having expertise in SIDS and representatives of public and private organizations concerned with SIDS, suggested that the Interagency Panel on SIDS develop both a short-form protocol and a longer, comprehensive protocol. The participants also recommended data items to include in the short-form protocol. This report includes the short form, which was developed to standardize the investigation of SUID scenes; ensure that information pertinent to determining the cause, manner, and circumstances of an infant death is considered in each investigation; and assist researchers in accurately determining the cause of and risk factors for SIDS. It can be used by medical examiners, coroners, death investigators, and police officers. Instructions for using the protocol are also included.
Sudden, unexplained infant deaths (SUIDs) are those for which no cause of death was obvious when the infant died. Sudden infant death syndrome (SIDS) (also known as crib death) is the most frequently determined cause of SUIDs. SIDS is "the sudden death of an infant under 1 year of age which remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene, and review of the clinical history" (1). SIDS should not be diagnosed if these criteria are not met.
Because these criteria are often not met and because practices for case investigation vary in the United States, efforts to determine the cause of and risk factors for SIDS have been hampered. The autopsy rate for SUIDs is about 90%; however, autopsy protocols vary by death investigation jurisdiction (which can consist of a county, district, or state) (2). The proportion of deaths ruled to be caused by SIDS and that include examination of the death scene is unknown, but it is probably very low because few jurisidictions have a written protocol for SUIDs scene investigation. For example, only four states (California, Minnesota, Missouri, and New Mexico) have detailed, written protocols for SUIDs scene investigation (3 6). Scene investigation protocols also differ by jurisdiction, and practices for investigating SUIDs vary among medical examiners, coroners, and others who research SUIDs (2).
Because no uniform procedure has been developed for collecting and evaluating information on SUIDs in the United States, the U.S. Senate and U.S. House of Representatives recommended in 1992 that the U.S Department of Health and Human Services Interagency Panel on SIDS establish a standard scene investigation protocol for SUIDs (7). Two members of this panel, the Division of Reproductive Health of CDC and the National Institute for Child Health and Human Development of the National Institutes of Health, convened a workshop in July 1993 to gather information and develop ideas that could be used to establish such a protocol. One recommendation from the workshop participants was to develop both a short-form protocol and a more extensive protocol. This report includes the short-form protocol developed by the Interagency Panel on SIDS and instructions for using it.
SIDS is listed on death certificates as the cause of death for 5,000 6,000 infants (age 0 364 days) each year in the United States. The mortality rate due to SIDS has declined gradually, from a high of 1.5 per 1,000 live births in 1980 to 1.2 per 1,000 live births in 1993 (7 10), but the reason for this decline is not known. For postneonates (age 28 364 days), SIDS is the leading cause of death (accounting for about 35% of postneonatal deaths) (7,8).
The distribution of age at death is the most unique epidemiologic feature of SIDS cases (11). The risk of SIDS peaks at 2 4 months of age; SIDS is uncommon during the first month of life and after the sixth month of life. About 90% of SIDS cases occur in children under 6 months of age. In the United States, the incidence of SIDS is greater during the winter months than the summer months (11,12).
Although the etiology and pathogenesis of SIDS are unknown, increased risk for SIDS is associated with many maternal characteristics, infant characteristics, and environmental factors (12). The most consistently reported and potentially modifiable risk factors are lack of breast-feeding (11,13), exposure to tobacco smoke in utero (12 15) or during infancy (13,15), and the infant sleeping prone (12,16 18). Other factors associated with SIDS include male sex, low maternal education, young maternal age, high parity, the mother being unmarried, and late or no prenatal care (12). Some researchers have suggested that SIDS has multiple etiologies and that predisposing biochemical, anatomic, or developmental abnormalities may increase the risk of SIDS for infants (1).
A standard protocol for SUIDs scene investigation offers several potential benefits (Exhibit 1 Table_E1). For example, it may assist researchers in accurately determining the cause of and risk factors for SIDS by reducing the likelihood of incorrect identification of SIDS and by enabling or facilitating the gathering of data on deaths correctly determined to be caused by SIDS. Any SUID that has not been thoroughly investigated should be classified as undetermined or unexplained. For about 15% of SUIDs, a thorough investigation will determine or identify a cause of death other than SIDS (19).
The Interagency Panel on SIDS "Workshop on Guidelines for Scene Investigation of Sudden Unexplained Infant Deaths" was held in Rockville, Maryland, on July 12 and 13, 1993. Before the workshop, the participants (who represented federal agencies as well as public and private sector organizations) received information about SIDS, including a sample list of data items drawn from known written protocols on SUID scene investigations. During the workshop, participants discussed five topics:
Participants clarified, combined, or eliminated ideas and ranked them in order of importance. After the workshop, the organizers combined and summarized the groups' information and ideas (20).
The principal goal developed by the workshop participants was to create both a standardized short-form protocol and a standardized expanded protocol for SUID scene investigation. Participants also specified five purposes of the short-form protocol (Exhibit 2 Table_E2). Using the ideas developed in each of the five topic areas, the Interagency Panel on SIDS developed a draft, short-form protocol compatible with death investigation report forms previously published by CDC's Medical Examiner and Coroner Information Sharing Program. The draft was reviewed by panel members and selected experts who attended the workshop; the resultant Sudden Unexplained Infant Death Investigation Report Form (SUIDIRF) and accompanying instructions are available from CDC (Appendix). * Suggested modifications to the SUIDIRF will be used to develop the expanded protocol (the U.S. Model SUID Investigation Protocol), which will include specific guidelines for conducting investigations, asking the questions contained in the protocol, completing the protocol, establishing a computer data base for information gathered by using the protocol, and meeting the recommendations outlined in the workshop report (20).
USING THE SUIDIRF
All sudden and unexplained deaths among infants up to 1 year of age may be investigated by using the SUIDIRF. Local statutes define which infant deaths must be investigated, but these deaths usually include any in which the cause or circumstances of death are unknown (including deaths that are apparently due to a natural cause but cannot be confirmed by medical records, a personal physician, or a witness to the death) and any for which child abuse or neglect is suspected.
The SUIDIRF is not copyrighted and can be used with or without modification by any agency involved in investigating SUIDs. The protocol is intended for use primarily by medical examiners, coroners, death investigators, and police officers. Public health workers should ensure that local medical examiners and coroners are familiar with this report and the SUIDIRF.
Because the SUIDIRF is available in electronic form, it may be modified to meet the needs of individual investigators or agencies. For example, the data items may be rearranged, larger spaces for writing can be created, and data items may be added. To ensure uniform collection of core data items, items currently on the SUIDIRF should not be deleted or ignored. Further, these items may be important to other agencies or organizations examining trends. CDC is investigating options for computerized data entry and report generation in the SUIDIRF format.
The death scene investigation is an essential component of a thorough investigation of SUIDs. Information gathered during the scene investigation augments that obtained from an autopsy and review of the infant's clinical history. Information gathered during a SUID scene investigation can help the pathologist interpret postmortem findings and rule in or rule out accidental, environmental, and unnatural causes of deaths, including child abuse and neglect. Although the ultimate goal of a SUID scene investigation is to accurately assign a cause of death, no less important goals are identifying health threats posed by consumer products, identifying and understanding risk factors associated with SUIDs, and using the opportunity to refer families to grief counseling and support groups. These guidelines set the stage for standardized investigative procedures, data collection instruments, and training for SUID scene investigations, and they underscore the central role of medical examiners and coroners in public health surveillance and epidemiologic research of SUIDs (21).
Centers for Disease Control and Prevention Medical Examiner and Coroner Information Sharing Program 4770 Buford Highway, N.E. Mail Stop F 35 Atlanta, GA 30341-3724 Phone: (770) 488-7060 Fax: (770) 488-7044 E-mail: MECISP1@cehdeh1.em.cdc.gov
Comments on and suggestions for improving the usefulness of the SUIDIRF are welcome and may be directed as shown above.
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Exhibit 1. Reasons for a Standard Protocol for SUID Scene Investigations ==================================================================================== - To generate a single, reasonable hypothesis for the cause, manner, and mechanism of death. - To assist the pathologist, medical examiner, or coroner in ruling in or ruling out natural causes of death, child abuse or neglect, or injury. - To identify public health threats, such as those related to consumer products or unsafe health practices. - To contribute to the understanding of the cause of and risk factors for SIDS and other reasons for SUIDs and to develop preventive strategies. - To use the opportunity to provide parents and caregivers information about grief counseling, support groups, and healthy infant-care practices. - To provide information on SUIDs and SIDS to epidemiologists and agencies with an interest in the welfare of children. ====================================================================================
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Exhibit 2. Purposes of the SUIDIRF ====================================================================================== - To provide a generic, short-form, model protocol for investigating SUIDs. - To assist state and local death investigation jurisdictions in developing a uni- form, standardized, and systematic approach to investigating the scene of SUIDs. - To ensure that all information pertinent to determining the cause, manner, and circumstances of an infant's death is considered in each investigation. - To document the extent of investigation of a scene for SUIDs. - To provide information useful to the pathologist during autopsy. ======================================================================================
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