CDC’s Sudden, Unexpected Infant Death Initiative - ncfrp.org · CDC’s Sudden, Unexpected Infant Death Initiative Carrie Shapiro-Mendoza, PhD, MPH Lena Camperlengo, RN, MPH, DrPH(c)

CDC’s Sudden, Unexpected Infant Death Initiative

Carrie Shapiro-Mendoza, PhD, MPHLena Camperlengo, RN, MPH, DrPH(c)

May 20, 2009

Keeping Kids AliveA National Symposium if State Leaders in

Maternal & Child Health, Injury Prevention, & Child Death ReviewWashington, DC

Presentation outline• Definitions

• SUID Trends

• Importance of Case Investigation

• CDC’s SUID Initiative

• SUID Case Registry

• Partners

Definitions

SUID definition

• SUID = sudden, unexpected infant death

• Infant deaths that:– Occur suddenly and unexpectedly– Have no obvious manner and cause of death prior to

investigation

• Excludes deaths with an obvious cause, e.g., motor vehicle accidents

SUID and its subtypes

Neglect or homicide

Hypothermia/Hyperthermia

Metabolic disorders Poisoning

Unknown

Accidental suffocation

SIDS

SUID

Presenter

Presentation Notes

Any infant death that occurs suddenly and unexpectedly, including: SIDS Suffocation, overlaying, wedging or entrapment Strangulation Neglect or homicide Metabolic disorders Intoxication or poisoning Hypothermia or hyperthermia

SUID

Explained• Poisoning• Head injury• Metabolic disorder• Neglect or homicide• Hypo or hyperthermia• Accidental

suffocation??

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

Presenter

Presentation Notes

First, let’s discuss what is Sudden Infant Death Syndrome. The NICHD definition states that SIDS is the� “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 diagnostic codes for selected SUID

SUID ICD 9 Codes(1990-1998)

ICD 10 Codes(1999-2004)

ASSB E913.0 W75

SIDS 798.0 R95

Unknown cause 799.9 R99

ICD: International Statistical Classification of Diseases and Related Health Problems

NCHS definition of SIDS for coding purposes

• Sudden Death in Infancy or SDII• Sudden Infant Death or SID• Sudden Infant Death Syndrome or SIDS• Sudden Unexplained Death or SUD• Sudden Unexplained (Unexpected) Death in Infancy or SUDI• Sudden Unexplained Infant Death or SUID• Sudden plus (unexpected) or (unattended) or (unexplained)• Death plus (cause unknown) or (in infancy) or (syndrome)• Infant death plus (syndrome)• Presumed SIDS• Probably SIDS• Consistent with SIDS• Cot Death or Crib Death

Examples of deaths coded as ASSB

• 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, furniture

• Strangulation (infant’s head and neck caught between crib railings)

Presenter

Presentation Notes

Suffocation by: Soft bedding, pillow, or waterbed mattress Overlaying or rolling on top of or against infant while sleeping Wedging and entrapment of an infant between two objects such as a mattress and wall, bed frame, or furniture Strangulation by: Asphyxiation, such as when an infant’s head and neck become caught between crib railings.

Why be concerned about SUID?• SUID

– ~ 4600 per year– Rates comparable to birth defects mortality– About 2500 of these are SIDS

• SIDS– Leading cause of post-neonatal mortality – Third leading cause of all infant mortality

• Accidental suffocation & strangulation in bed– Rates have more than tripled in last decade– 3.7 to 12.5 deaths per 100,000 live-births from 1995 to

2005

• Potentially preventable infant mortality

Presenter

Presentation Notes

Why be concerned about SIDS and other sudden, unexplained infant deaths? Although SIDS rates have declined in recent years, SIDS is still the third leading cause of infant mortality and the leading cause of postneonatal mortality (28 days to 1 year of age). Rates of accidental suffocation and strangulation in bed have nearly tripled in the past two decades (from 3.6 per 100,000 live-births in 1989 to 10.4 in 2003). SIDS remains an important public health priority accounting for 2500 deaths per year. When we combine these SIDS deaths with all sudden, unexplained deaths, we get 4600 deaths per year, a rate that is comparable to the U.S. birth defects infant mortality rate. Because SIDS and other SUID are a leading cause of infant death, CDC is committed to preventing these deaths. In a moment I will explain why we have been working with those who investigate and certify sudden unexplained infant deaths.

SUID Trends

Mortality rates due to SIDSU.S. 1980-2004

55

130

020406080

100120140160180

1980 1982 1984 1986 1988 1990 1992 1994 1996 1998 2000 2002 2004

Year

Rate

per

100

,000

live

birt

hs

Presenter

Presentation Notes

Since 1990, the SIDS rates have declined 57% from 130 to 56 deaths per 100,000 live births in 2001. Decline attributed to a decrease in prone sleeping following release of AAP sleep position statement in 1992 CLICK and the introduction of the national “Back-to-Sleep” education campaign in 1994 CLICK. [National Infant Sleep Position Study -- frequency of prone sleeping decreased from 70% in 1992 to 14% by 2000] More recently CLICK, researchers have suggested that the continued decline may be due to a change in the way SIDS deaths are classified, but to date we have limited evidence to support this.

Changing trends

• Decline in SIDS is offset by increasing rates of:– Unknown cause– ASSB

• This change in classification can be explained by:– How investigations are conducted– How diagnoses are made

Shapiro-Mendoza CK et al, Am J Epidemiol, 2006Shapiro-Mendoza CK et al, Pediatrics, 2009

Presenter

Presentation Notes

Recent studies have suggested a possible change in reporting or classification. CDC research has found that the decline in SIDS rates since 1999 is offset (or can be explained) by increasing rates of cause unknown/unspecified and other sudden, unexplained infant deaths (also referred to as SUID) such as those deaths attributed to overlaying, suffocation, and wedging,. This change in reporting or classification of SUID can be explained by changes in how investigations are conducted and by how diagnoses of SUID are made; that is whether to assign SIDS as a cause of death or say accidental suffocation in bed or overlying. /******************* Some of this change in classification or reporting can be explained by states missing the deadline to amend cases. For example, in 2000-2001, many states including CA, TX, and NY reported fewer SIDS deaths than pending cases that became assigned “unknown cause” when they were not amended by the NCHS deadline. Anecdotally, we have learned that there is differential reporting by DSIs in the way SUDI are assigned a cause of death. While some of the decline in the incidence of SIDS in recent years may be due in part to improved diagnosis of other causes of SUDI, many DSI reported a reluctance to attribute SUDI to SIDS. *** So even though SIDS rates have declined, there is now growing concern about the accuracy, precision and consistency of the SIDS diagnosis.

Infant mortality rates due to SIDS, ASSB plus cause unknown, and combined SUID,

United States, 1990-2005

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

Year

Rat

e pe

r 100

,000

live

brth

s

SIDS ASSB plus cause unknown Combined SUIDSource: CDC WONDER, Mortality Files

Presenter

Presentation Notes

This graph has the same axis as the previous graph and the red line in the middle is the same red line I just showed you. It represents the SIDS death rate over time. But let’s see what happens when we add in accidental suffocation in bed (ASSB) and cause unknown in the yellow line on the bottom. The top light blue line represents the combined total of these 3 causes of death: SIDS, ASSB and cause unknown. We still see the steady decline in SIDS deaths in the early 1990’s, which coincides with the Back to Sleep campaign. Look at how closely the combined SUID line matches the decline in SIDS in this time period. Note in 1996 the CDC released the first Sudden Unexplained Infant Death Investigation Reporting Form (what we call the SUIDIRF)- a tool used by medico-legal professionals to gather pertinent information from the infant death scene. (SHOW ON SLIDE). From 1996, the combined SUID line begins to straighten out and then it stagnates. Beginning about this time, we see the decline in SIDS is being offset by an increase in ASSB and cause unknown deaths. We can also point out that since 2001, the rate of combined SUID, as well as the rate of SIDS and the rate of ASSB plus cause unknown, has stagnated. So, what’s going on? (NEXT SLIDE)

Proportionate SUID mortality,United States, 1990-2004

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004

YearASSB Cause unknown SIDS

Reason for change in trends• The way medical examiners and coroners

report these deaths seems to be changing – Moving away from SIDS as a diagnosis– Reporting more suffocation

• Reason unknown, but possibly related to…– Better and more thorough investigations– Stricter adherence to 1991 SIDS definition– Increase in child death reviews

* Shapiro-Mendoza CK et al, Am J Epidemiol, 2006

Why be concerned about changes in reporting practices?

• Many SUID are not investigated • Even if investigated, cause-of-death data are

not collected and reported consistently • This hinders our ability to monitor national

trends, identify risk factors, or evaluate intervention programs

• If we want to reduce these infant deaths, we need valid and reliable data to support our research and prevention efforts

Importance of the Case Investigation

Importance of a case investigation

• Determine accurate cause and manner of death

• Differentiate between causes of SUID

• Improve validity and reliability of data– Monitor trends in SUID– Conduct research to identify risk factors– Design interventions to prevent SUID– Evaluate programs aimed at prevention

Presenter

Presentation Notes

Components of a comprehensive case investigation

• Thorough death scene investigation–Scene photos–Doll reenactment–Completion of SUIDI RF

• Complete Autopsy–Toxicology, histology, radiology, etc.

• Review of maternal and infant medical records–Identify possible biologic risks

All completed and available to ME/C before determining cause and manner of death

Systems influencing reporting and classification

SUID Case Registry

Sudden Unexpected Infant Death

Death Scene Investigation

Medical Examiner/Coroner/

Pathologist

Death Certificate

Child Death

Review

Best Case Scenario

Worst Case Scenario

SUIDIRFPhotosDolls

Has all info needed

Proper wording &

coding

Complete autopsy

No data collected

Mis-worded & mis-coded

‘Visual’ autopsy

Does not have all

info

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.-- SUID Feasibility Study Report, 2007

CDC’s SUID Initiative and Activities

Goals of the CDC’s SUID Initiative

• Standardize and improve data collected at death scene

• Promote consistent diagnosis of cause of death

• Improve national reporting of SUID

• Prevent SUID by using improved data to identify those at risk

SUID Initiative main activities• Revise the 1996 death scene investigation form• Develop training curriculum and materials• Disseminate the SUIDI Reporting Form and the

training curriculum and materials

• Promote the use of the SUIDI Reporting Form and the training curriculum and materials

• Evaluate the impact of the SUIDI Training Academies

• Conduct a pilot SUID case registry project

SUID Initiative main activitiesRevise the 1996 Sudden, Unexplained Infant

Death Investigation Reporting Form (SUIDIRF) and guidelines– Formed a national workgroup

– Evaluated form and field testing was positive

2006 SUIDI Reporting Form

Presenter

Presentation Notes

The SUIDIRForms consist of 5 “required” scene forms, 2 “summary” forms and 14 “supplemental forms”. Depending on the specific circumstances of the scene – the investigator can “build” their own “reporting package” by selecting the forms necessary to collect the critical data at the specific scene.

SUID Initiative main activities

Develop training curriculum and materials• Convened a national steering committee to plan

training content and give endorsement• Convened a national work group of experts with

experience conducting scene investigations and infant death review to write training curriculum materials

Academy curriculumAcademy participants are trained to:• Properly complete the revised SUIDI reporting form• Recognize stages of infant growth and development• Interview (vs. interrogate) family/witnesses at scene• Differentiate SIDS, suffocation, and other sudden

deaths• Create scene reenactments and take photos• Conduct a comprehensive death scene investigation• Classify SUID death and fill out a death certificate

SUIDI curriculum guide

SUIDI scene guidelines

SUIDI training text

Presenter

Presentation Notes

The SUIDIRForms consist of 5 “required” scene forms, 2 “summary” forms and 14 “supplemental forms”. Depending on the specific circumstances of the scene – the investigator can “build” their own “reporting package” by selecting the forms necessary to collect the critical data at the specific scene.

Instructional DVD

Disseminate the SUIDI Reporting Form and the training curriculum and materials

• Conduct 5 regional train-the trainer academies

• Train multidisciplinary teams of 5 from each state


Presenter

Presentation Notes

Our third activity is disseminating the SUIDIRF. We want the SUIDIRF to be widely disseminated throughout the U.S. This means we want investigators from every jurisdiction in every state to have access and knowledge about the SUIDIRF and training curriculum. To do this we are training a national train-the-trainer staff. This trained national staff are then going on to train personnel in their regions and jurisdictions. We hope to conduct 5 regional train-the trainer academies from 2006-2007. The fourth activity is promoting the SUIDIRF and training materials with assistance from a National Steering Committee. The Steering Committee made up of representatives from organizations whose members conduct infant death scene investigations or use data from the DSI to prevent SUID. Their role is to promote the SUIDIRF and training materials among their memberships. Advised us on the final draft of the revised SUIDIRF and to guide the dissemination of national training materials. **********EXTRA************** Next, we hope to conduct trainings at regional conferences. By having regional trainings, we hope that training will be more accessible and help us reach to county level jurisdictions. Finally, we want to test the effectiveness of the training. This is important so that we are certain that students taking the training will benefit from having a valuable experience. We want instructors to be knowledgeable and adequately trained professionals with accurate and useful curriculum material. We also want to ensure that students leave the training confident and competent in their ability to conduct a thorough infant death investigation.

SUIDI Training Academies

• Beginning in 2006, 5 member teams from each state (plus DC and 2 Indian Nations) attended training

• Participants were medical examiners/coroners, law enforcement, educators, child advocates and death scene investigators

• Train the trainer format

• The training took place over 3.5 days

SUIDI Training Academy team members

• Medical examiner or coroner

• Law enforcement

• Death scene investigator

• Post secondary teacher

• Child advocate

Training accomplishments • 357 train-the-trainers at pilot training

• 275 train-the-trainers at 5 regional academies

• 50 state teams trained, 1 in each of 50 states

• 14,456 secondary participants trained to date– 11,026 at state and local conferences,

academies, workshops– 3,430 participants at 22 different sites in 11

states

Promote the use of the SUIDIRF and training materials


Endorsements

• National Sheriff’s Association

• National Association of Medical Examiners

• American Board Medicolegal Death Investigators

• International Associations of Coroners and Medical Examiners

CDC’s SUID Case Registry

What is a case registry?

• Ongoing, systematic collection, analysis, interpretation, and dissemination of data about a health-related event

• Used for public health action to reduce morbidity and mortality and to improve health

CDC. Updated guidelines for evaluating public health surveillance systems:recommendations from the guidelines working group. MMWR 2001;50(No. RR-13).

SUID Case Registry cycle

Identify SUID cases

Act on findings

Collect dataReview records

Analyze results

Evaluate and refine

Why do we need a registry?

• To accurately monitor the incidence of and characteristics associated with deaths attributed to SUID in the United States

• Use data to inform prevention activities and potentially save lives

How is death certificate data limited?

• Only describe infant demographics and cause of death

• Don’t mention the quality of the death scene investigation or if one was even done

• Don’t tell about the circumstances or factors that may have contributed to the SUID death

List of terms that will be coded as a SIDS death when reported on the death certificate

• Sudden Death in Infancy or SDII• Sudden Infant Death or SID• Sudden Infant Death Syndrome or SIDS• Sudden Unexplained Death or SUD• Sudden Unexplained (Unexpected) Death in Infancy or SUDI• Sudden Unexplained Infant Death or SUID• Sudden plus (unexpected) or (unattended) or (unexplained)• Death plus (cause unknown) or (in infancy) or (syndrome)• Infant death plus (syndrome)• Presumed SIDS• Probably SIDS• Consistent with SIDS• Cot Death or Crib Death

Objectives of SUID Case Registry

1. Collect consistent information about the circumstances and events associated with SUID cases

2. Improve the quality and completeness of SUID data collection systems

3. Use sub-classifications of SUID to better understand gaps in SUID medicolegal systems

4. Improve knowledge about trends and characteristics associated with SUID

• Process:– Establish a multidisciplinary review committee– Identify SUID cases– Collect data (review records)– Present data to the multidisciplinary review

committee– Draw conclusions for research and prevention

purposes– Enter data into SUID registry database– Act on the findings (policy, advocacy,

prevention)

SUID review and case registry

The Scene The Pathologist The Coroner/ The Death Review Medical Examiner

SUIDI RFEMS Run ReportsLaw Enforcement Death Scene InterviewsDoll ReenactmentPhotos

Autopsy ReportToxicology Report

Death CertificateME/C report CDR Case Report

SUID Case Registry

SUID Case Registry expected impacts• Short Term Impact

– Improve knowledge of events & characteristics surrounding SUID at national, state and local levels

• Medium Term Impact– Identify of at-risk groups– Develop and evaluate of prevention and education

programs– Promote policy and practice changes for the

investigation of SUID• Long Term Impact

– Reduce in potentially preventable infant deaths

Presenter

Presentation Notes

Partners

Professional medical

associations

SIDS organizations and advocacy groups

Law enforcement

agencies

American Academy of Pediatrics

American Board of Medicolegal Death

Investigators

National Association of Medical Examiners

International Association of Forensic Nurses

First CandleCJ Foundation for

SIDS

Association of SIDS and Infant Mortality

Programs

Cribs for Kids

National District Attorneys

Association

International Association of Chiefs

of Police

National Sheriff’s Association

Non-Federal Partners

National Center for Child Death Review

International Association of Coroners and Medical

Examiners

Federal Partners• Health Resources and Services Administration • Federal Bureau of Investigation• National Institute of Justice• Consumer Product Safety Commission• Indian Health Service• Department of Defense• National Institutes of Health • National Center for Health Statistics• Office of Minority Health, DHHS

Presenter

Presentation Notes

As I have said throughout this presentation, each step of the way for each activity we have formed national partnerships by inviting federal and non-federal agencies to collaborate with us on national work groups and steering committees. Listed here are some of our federal partners. Federal Bureau of Investigation National Institute of Justice Consumer Product Safety Commission Indian Health Service Department of Defense Health Resources and Services Administration National Institutes of Health National Center for Health Statistics Office of Minority Health, DHHS

CDC Acknowledgements

• Kay Tomashek • Terry Davis• Sarah Blanding• Jennifer Wingo• Melissa Kimball• Darlisha Williams• Tai Baker

CDC SUID Initiative Team

Carrie Shapiro-Mendoza, PhD, MPHLena Camperlengo, RN, MPH, DrPH Candidate

Shin Y. Kim, MPHConnie Bish, PhD, MPH

Terry Njoroge, MPHFalicia Gibbs, MPH student

Centers for Disease Control and Prevention4770 Buford Highway, NE, Mailstop K-23

Atlanta, Georgia 30341-3717770-488-6250

http://www.cdc.gov/SIDS.htm

• Disclaimer: The findings and conclusions in this presentation have not been formally disseminated by the Centers for Disease Control and Prevention/the Agency for Toxic Substances and Disease Registry and should not be construed to represent any agency determination or policy.

Thank you

Extras

Infant mortality rates due to ASSB United States, 1990-2005

CDC releases SUIDIRF

12.5

3.4

0

2

4

6

8

10

12

14

1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005

Year

Dea

ths

per 1

00,0

00 li

vebi

rths

Source: CDC WONDER, Mortality Files

SUIDIRF: Sudden Unexplained Infant Death Investigation Reporting Form

Mechanism attributed to suffocation, U.S., 2003-2004

35.2 33.8

14.2 13.7

2.6 0.40

5

10

15

20

25

30

35

40

Perc

ent

Unknown Overlay Wedging Soft bedding Face down onsurface

Other

Source: Write-in text from cause of death section, U.S. death certificates coded as W75, Multiple Cause of Death Data File, U.S., 2003-2004

Sleep surface or place where death occurred, U.S., 2003-2004

54.6

27.5

10.0 6.81.1

0

10

20

30

40

50

60

Perc

ent

Unknown Bed Sofa Crib Other

Sleep surface or place where death occurredSource: Write-in text from cause of death section, U.S. death certificates coded as W75, Multiple Cause of Death Data File, U.S., 2003-2004

Bedsharing or co-sleeping reported, U.S., 2003-2004

42.6

51.2

6.3

0

10

20

30

40

50

60

Perc

ent

Unknown Yes No

Bedsharing or co-sleeping reportedSource: Write-in text from cause of death section, U.S. death certificates coded as W75, Multiple Cause of Death Data File, U.S., 2003-2004

Documents

CDC’s Sudden, Unexpected Infant Death Initiative - ncfrp.org · CDC’s Sudden, Unexpected Infant Death Initiative Carrie Shapiro-Mendoza, PhD, MPH Lena Camperlengo, RN, MPH, DrPH(c)