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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: cdcinfo@cdc.gov 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