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Transcript of CDC’s Sudden Unexpected Infant Death Case Registry June 4, 2008 National Association for Public...
CDC’s Sudden Unexpected Infant Death Case Registry
June 4, 2008
National Association for Public Health Statistics and Information Systems Annual Meeting Orlando FL
Lena Teresa Camperlengo RN, MPH, DrPH candidateMaternal and Infant Health Branch
Division of Reproductive Health National Center for Chronic Disease Prevention and
Health PromotionCenters for Disease Control and Prevention
TMTM
Presentation outline
• Definitions of SUID, SIDS• CDC’s SUID Initiative Activities• Development of the SUID Case Registry
Some causes of deaths that occur suddenly and unexpectedly during infancy
Neglect
or homicide
Hypothermia/Hyperthermia
Metabolic disorders
Poisoning
Unknown
Accidental suffocation
SIDS
SUID
Explained vs. Unexplained
Explained• Accidental
suffocation• Poisoning• Head injury• Metabolic disorder• Neglect or homicide• Hypo or
hyperthermia
Unexplained• SIDS• Cause unknown or
unspecified• SIDS, but cannot rule
out suffocation from unsafe sleep environment
Sudden Infant Death Syndrome (SIDS)
“sudden death of an infant under one 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.”
* Willinger M, James LS, Catz C. Pediatr Pathol 1991.
Why be Concerned with SUID?• SUID rates comparable to birth defects
– 4600 SUID deaths per year– 2500 SIDS deaths per year
• SIDS– Leading cause of postneonatal mortality (age 1 month- 12 months)– Third leading cause of infant mortality
• Accidental suffocation & strangulation in bed– Rates have tripled in last decade– 4.1 to 12.5 deaths per 100,000 live-births from
1994 to 2004
• Preventable Infant Mortality?
Mortality rates due to SIDS, U.S., 1989-2005
0.0
20.0
40.0
60.0
80.0
100.0
120.0
140.0
160.0
1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005
Year
Rat
e pe
r 10
0,00
0 liv
e bi
rths
Infant Mortality Rates due to SIDS and Other SUID* USA, 1989-2001
0
20
40
60
80
100
120
140
160
180
1989 1991 1995 1997 1999 2001
Year
Rat
e p
er 1
00,0
00 l
ive
bir
ths
SIDS
OtherSUID
* SUID include cause; accidental suffocation and strangulation in bed; other accidental suffocation and strangulation; and neglect, abandonment and other maltreatment syndromes.
Diagnostic Shift?
• Decline in SIDS is offset by increasing rates of:– Cause unknown/unspecified– Other SUID (suffocation, wedging, overlaying,
poisoning)
• This change in classification can be explained by:– How investigations are conducted– How diagnoses are made
* Shapiro-Mendoza CK, Tomashek KM, et. al., Am J Epidemiol, 2006.
Modifiable Risk Factors: Potentially Preventable
• Smoking and substance abuse– Prenatal maternal – Postnatal exposure cigarette smoke
• Prone (face down) and side sleeping • Soft sleep surfaces and loose bedding• Overheating• Bed sharing with:
– intoxicated individual – caregiver who smokes– other than a parent
Goal of the CDC’s SUID Initiative
– Standardize and improve data collected at infant death scenes
– Promote consistent diagnosis of cause of death on SUID
– Improve national reporting of SUID estimates– Prevent SUID by using improved data to identify
those at risk and support prevention programs
SUID Initiative Activities• Updated SUIDI Reporting Form (2006)• Created SUID Investigation training curriculum
and support materials• Conducted 5 regional SUIDI Training
Academies• Trained more than 250 individuals
– These have gone on to train more than 11,000 individuals
• Pilot study: is case registry feasible?
Pilot Study: 7 States
• 2006-2007 feasibility study – is a case registry possible?
• Built on NVDRS state protocols• Added infant death component• Case definition: ICD-10 codes• Asked states to collect data from all eligible
cases from 2004-2005 (retrospective) • Abstracted data from a variety of sources
Principal Data Sources• Death certificates• SUID Investigation Reporting Form • Coroner and medical examiner records
• Autopsy Results• Chart Review• Lab work (toxicology, metabolic, X-Rays)
• Law enforcement reports • Birth certificates• Child Fatality Review/Child Death Review• Medical records• EMS/ED Records
Case-finding Process
• Death Certificate used to identify cases–ICD 10 codes
• Deaths meeting the case definition were identified from those received at the state DOH
Pilot Study Program Model
SUID Occurrence
Death Certificate
State Health Department
obtains SUID information
from multiple data sources
CDC
Autopsy
Birth Certificate
SUIDIRF or jurisdictional
equivalent
State Health Department creates single case file for
each SUID that contains data from multiple sources
Data from additional sources (if available)
A major increase in the capture of SUIDI information will depend on changes in death scene investigation protocols and/or their implementation. We found that much of the requested SUIDI information was just not available in existing documentation.-- Georgia SUID Pilot Evaluation Report, 2007
From Pilot to National Case Registry
• Two national information gathering sessions:– One: Program model, partners, case definition– Two: Death classifications, variables to include
• Suggestion to build on existing web based system (National Child Death Review?)
• Case registry idea gaining attention
Challenges
• Research built on good death scene investigation and autopsy information – Need to continue efforts for quality, consistent death
scene information and autopsy– Identifies gaps in death scene investigation
• Including all possible partners can expand scope• Capturing more data than we can afford or need
Next Steps
• Second Information gathering session – July 31- August 1 at CDC
• Formalize program model• Decide on minimal set of variables• Determine classification system
– Was a quality death scene and quality autopsy done?
• Buy in from all partners• Explore web based data collection system• Test the model
CDC SUID InitiativeCarrie Shapiro-Mendoza, PhD, MPHLena Camperlengo, RN, MPH , DrPH (c)Shin Y. Kim, MPHTai Baker, MPH, PHPS Fellow
Centers for Disease Control and Prevention4770 Buford Highway, NE, Mailstop K-23Atlanta, Georgia 30341-3717770-488-6250
http://www.cdc.gov/SIDS.htm CDC Disclaimer:
CDC, our planners, and our presenters wish to disclose they have no financial interests or other relationships with the manufactures of commercial products, suppliers of commercial services, or commercial supporters.
Presentations will not include any discussion of the unlabeled use of a product or a product under investigational use.
TMTM