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

Background

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

CDC’s SUID Initiative Activities

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?

Development of the SUID Case Registry

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