SUID Case Registry: Monitoring SIDS and other sleep-related infant
Transcript of SUID Case Registry: Monitoring SIDS and other sleep-related infant
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Health Scientist
Maternal and Infant Health Branch
City MatCH webinar August 28, 2012
SUID Case Registry: Monitoring SIDS and
other sleep-related infant deaths
National Center for Chronic Disease Prevention and Health Promotion
Division of Reproductive Health
Lena Teresa Camperlengo RN, DrPH
Presentation outline
Define SIDS and SUID
Explain how death certificates are used for
surveillance of SIDS and other SUID
Show trends in SIDS and other SUID
Describe CDC’s SUID Case Registry Pilot Program
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DEFINITIONS OF SIDS AND OTHER SUID
SUID Definition
SUID : Sudden, unexpected infant death
Infant deaths that:
Occur suddenly and unexpectedly in previously healthy infants
Have no obvious cause of death prior to investigation
(unexplained)
Excludes deaths with an obvious cause, e.g., motor vehicle
accidents
SIDS is a type of SUID
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Some Types of SUID
SUID
SIDS
Accidental
suffocation
Undetermined
Infections Inborn
errors of metabolism
Cardiac channelo-pathies
Poisoning
SUID Types and Categories
Unexplained*
SIDS
Undetermined cause
Explained
Long QT
MCAD
Head injury
Infanticide
Hyperthermia
Infection
Poisoning
*Cause of death was unexplained by autopsy or autopsy was not completed
Suffocation
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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.”
ICD-10 code R95
Willinger M, James LS, Catz C. Pediatr Pathol 1991
Unknown Cause
“…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.”
Other ill-defined and unspecified causes of mortality
Sometimes called Undetermined, Unspecified
ICD-10 code R99
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Accidental Suffocation and Strangulation in Bed (ASSB)
ICD-10 code W75
Suffocation by soft bedding, pillow,
waterbed mattress
Overlaying (rolling on top of or
against baby while sleeping)
Wedging or entrapment between
mattress and wall, bed frame, etc
Strangulation (infant’s head and
neck caught between crib railings)
Established Risk Factors for SIDS
Native American
African American
Prone/side sleep position
Maternal smoking during
pregnancy
Maternal drug use during
pregnancy
Late or no prenatal care
Prematurity and/or low
birth weight
Environmental tobacco
smoke
Overheating
Soft sleep surface
Bed sharing
Young maternal age
Male sex
Not breastfeeding
Not using a pacifier
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Public Health Implications of SUID
About 4200 per year; half are SIDS
Most frequently reported causes:
SIDS (R95)
• Leading cause of postneonatal mortality
Unknown or undetermined cause (UNK) (R99)
Accidental suffocation & strangulation in bed (ASSB) (W75)
• Leading cause of infant injury mortality
• Potentially preventable
Less frequently reported causes:
Infanticide/intentional suffocation (<5%), inborn errors of
metabolism (1%), cardiac channelopathies (5-10%), infection
Sources: Shapiro-Mendoza et al, Peds, 2009. Kinney and Thach, NEJM, 2009.
SUID Subtypes
CDC Wonder. 2007
SIDS
UNK
ASSB
OTH
Sudden Infant Death
Syndrome (SIDS)
Unknown or undetermined
cause (UNK)
Accidental suffocation &
strangulation in bed (ASSB)
Other causes (OTH):
Infanticide/intentional suffocation
Inborn errors of metabolism
Cardiac channelopathies
Infection
Total SUID: 4,200
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Distinguishing SUID types
Several causes of death come under the
umbrella of SUID
Multiple definitions for each cause of death
No consistent or standard definitions
Medical Examiners/Coroners may certify death
differently based on local jurisdiction or state practices
Difficult to distinguish between:
SIDS
ASSB
Unknown Cause
TRENDS IN SIDS AND OTHER SUID MORTALITY
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SIDS mortality rates, US, 1990-2007
0
20
40
60
80
100
120
140
160
1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007
Source: National Center for Health Statistics, CDC
ASSB infant mortality rates, US, 1990-2007
3.4
15.5
0
2
4
6
8
10
12
14
16
18
1990 1992 1994 1996 1998 2000 2002 2004 2006Year
Source: CDC WONDER, Mortality Files
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US SUID-specific infant mortality rates 1990-2009
0
20
40
60
80
100
120
140
160
1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009
SIDS UNK ASSB Combined SUID
SIDS: sudden infant death syndrome, UNK: Unknown cause, ASSB: accidental suffocation and strangulation in bed, Combined SUID: SIDS+UNK+ASSB Source: CDC WONDER, Mortality Files
De
ath
s p
er
10
0,0
00
bir
ths
Infant Supine Sleep Position 1992 - 2010
13%
73%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Source: National Infant Sleep Position Study
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Proportion of SUID Unexplained by Autopsy, or no Autopsy
SIDS84%
UNK14%
ASSB2%
SIDS: Sudden infant death syndrome UNK: Unknown cause ASSB: Accidental suffocation and strangulation in bed
SIDS58%
UNK27%
ASSB15%
1996 2006
Why the change in trends in SIDS and other SUID since 1999?
Way medical examiners and coroners certify these deaths seems to be changing
Moving away from SIDS as a diagnosis
Reporting more deaths as unknown or as suffocation
Reason unknown, but possibly related to…
More thorough investigations
Stricter adherence to 1991 SIDS definition
Increased influence of child death reviews
* Shapiro-Mendoza et al, AJE, 2006. Shapiro-Mendoza et al, Pediatrics, 2009.
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SUID SURVEILLANCE AND DEATH CERTIFICATES
What death certificates don‟t tell us about SUID
Cause of Death Section from US Death Certificate
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Mechanism attributed to suffocation deaths, US death certificates, 2003-2004
35.2 33.8
14.2 13.7
2.6 0.4
0
10
20
30
40
50
60
Unknown Overlay Wedging Soft bedding Face downon surface
Other
Pe
rce
nt
of
de
ath
s
Shapiro-Mendoza et al , Pediatrics, 2009
Sleep surface or place where death occurred, US death certificates, 2003-2004
54.6
27.5
10 6.8
1.1 0
10
20
30
40
50
60
Unknown Bed Sofa Crib Other
Pe
rce
nt
of
de
ath
s
Shapiro-Mendoza et al , Pediatrics, 2009
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Bedsharing or co-sleeping reported, US death certificates, 2003-2004
42.6
51.2
6.3
0
10
20
30
40
50
60
Unknown Yes No
Pe
rce
nt
of
de
ath
s
Shapiro-Mendoza et al , Pediatrics, 2009
What is needed?
More comprehensive data to increase knowledge
about:
Circumstances or factors that may have contributed to or caused
the SUID case
• Sleep environment
• Prior medical history
Quality of the death scene investigation or if one was even done
A SUID surveillance system that builds upon child
death review may be the answer
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CDC’S SUID CASE REGISTRY PILOT PROGRAM
A new surveillance system to monitor trends in SIDS and other SUID
SUID Case Registry: Goals and Objectives
Create state-level surveillance
Categorize SUID using standard definitions
For each type of SUID:
Monitor trends
Describe demographic and environmental factors
Inform prevention activities and potentially prevent
deaths
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Scope of CDC’s SUID Case Registry
Enhances current Child Death Review activities
Currently includes 9 funded states and X unfunded states
Pilot states are required to identify, review, and enter
data for all SUID cases in their state
Data sources include death scene investigations,
autopsy reports, death certificates, infant medical
history and social services
Data collection began January 1, 2010
CDR Case Report
What is Child Death Review?
Multidisciplinary team reviews
1,200 state and local teams
Teams in all 50 states and the District of Columbia
Increasing focus on prevention
The National Child Death Review Case Reporting
System (NCDR‐CRS) is being updated to Version 3.0
36 states and their local teams were using the CRS in 2011
By the end of 2012, it is expected that 45 states will be enrolled in
the system
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Variables collected in the SUID Case Registry
Individual variables
Sleep environment
Maternal health, including pregnancy complications
and injury
Infant health, including newborn screening
Investigation variables
Components of death scene investigation
Tests and exams performed during autopsy
SUIDIRF
Law Enforcement reports
Witness interviews
Scene reenactment
Scene photos
Medical records
Social service records
Death Certificate
ME/C report
Autopsy report
SUID case review by
multidisciplinary team
SUID Case Review Data Sources
EMS reports
Hospital reports
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The SUID Case Registry is…
A process that must involve multidisciplinary team
review
A qualitative and quantitative process
A tool for assessing and improving case investigations
A vehicle for driving data to action
The SUID Case Registry is NOT…
A data linkage project
A fill-in-the-blank exercise
An isolated process implemented without input from
key partners such as child death review, medico-legal
professionals and public health
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SUID Case Registry State Grantees
Funded and unfunded states collecting SUID variables
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States collecting SUID variables in 2013 using new Case Report
SUID Case Registry: Activities improving data quality
Technical assistance
Site visits to pilot states
Reverse site visits to CDC
Focuses on state-specific issues
Experts and states create action plan to overcome barriers
Case report modified
Improved question wording
Added new variable to represent state-level quality assurance
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n=14 n=18 Goal met
Goal not met
Improving data completeness
n=30
n=2
Pre Post
Goal: 80% completeness
Complete answers included :
“Yes” or “No” answers for categorical variables
Any valid number provided for numerical variables
Incomplete answers included:
Missing responses
Unknown responses
Total: 32 variables
SUID CASE REGISTRY PROGRESS TO DATE
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Cases as of June 30, 2012
*State began data collection 1/1/11
Total Identified Reviewed Cleaned
Colorado 112 106 102 Georgia 490 415 287 Michigan 511 464 376 Minnesota* 28 25 22 New Hampshire* 13 10 10 New Jersey 91 85 68 New Mexico 94 68 59 Total 1339 1173 924
Program Improvements
Improved timeliness
Receive monthly data files from Vital Statistics
Fund staff in ME/C office
Improved death scene investigation reporting
Pay for completed SUIDIRFs
Train investigators to conduct doll reenactment and provide dolls
Increased access to autopsy information
Create “summary sheets” for review teams
Fund staff in ME/C office
Implemented quality assurance measures
Ensure SUID Case Registry staff attend all review meetings
Review each case for missing/unknown fields at state level
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Success Stories
Colorado, Georgia Statewide Safe Sleep Coalitions
Combine Injury Prevention and MCH partners
Support AAP Guidelines
Shift discussion from a „no bedsharing‟ message to a broader safe
sleep environment discussion base don state data
New Jersey
Most of prevention money went to train CPS workers
Only 15% of cases have CPS involvement, but 95% receive
prenatal care
Shifted prevention money to train prenatal care providers
SUID Case Registry: Next Steps
Continue data quality improvement efforts
Implement categorization decision algorithm
Conduct process evaluation
Assess autopsy and death scene components
Develop external research request protocols
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For more information please contact Centers for Disease Control and Prevention
1600 Clifton Road NE, Atlanta, GA 30333
Telephone, 1-800-CDC-INFO (232-4636)/TTY: 1-888-232-6348
E-mail: [email protected] Web: www.cdc.gov
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
Acknowledgements Centers for Disease Control and Prevention:
Carrie Shapiro-Mendoza
Rebecca Ludvigsen
Carri Cottengim
National Center for the Review and Prevention of Child Death:
Theresa Covington
Heather Dykstra
Esther Shaw
SUID Case Registry Pilot States:
Colorado, Georgia, Michigan, Minnesota, New Hampshire, New Jersey, New Mexico
National Center for Chronic Disease Prevention and Health Promotion
Division of Reproductive Health