© 2008 ronald g. barr, mdcm, frcpc robert wood johnson foundation center for health policy at unm...
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© 2008 Ronald G. Barr, MDCM, FRCPC
Robert Wood Johnson FoundationCenter for Health Policy at UNM
FALL 2008 LECTURE SERIESInter-/Trans-Disciplinary Research on Health: What? How? Why?
“Where the Rubber Hits the Road:How Science Can Be Translated into Policy for
Prevention of Shaken Baby Syndrome”
Ronald Barr, MDCM, FRCP Canada Research Chair in Community Mental Health and
Professor of PediatricsUniversity of British Columbia
Co-Sponsors: College of Education; Center for Development and Disability, Health Sciences Center
© 2008 Ronald G. Barr, MDCM, FRCPC
Note on this slide set
• This is an abbreviated set of slides from the presentation. A number of slides could not be reproduced because of copyright and distribution rights limitations.
• This may result in some of the slides seeming to be “discontinuous” from one another.
• Note that these are copyrighted and for information only, and may not be distributed for any reason.
© 2008 Ronald G. Barr, MDCM, FRCPC
Where the rubber hits the Where the rubber hits the road: road: How science can be How science can be translated into policy for translated into policy for
prevention of Shaken Baby prevention of Shaken Baby SyndromeSyndrome
RWJ Foundation Center for Health PolicyUniversity of New Mexico
November 13, 2008
Ronald G. Barr, MA, MDCM, FRCPCDirector, Centre for Community Child Health Research, CFRI
Canada Research Chair in Community Child Health Research
Vancouver, BC, Canada
© 2008 Ronald G. Barr, MDCM, FRCPC
Disciplines/Methodologies Necessary Disciplines/Methodologies Necessary for SBS Prevention Programfor SBS Prevention Program
• Pediatrics• Primary Care Practice• Epidemiology• Clinical Research
Design• Child Developmental
Psychology• Statistics• Gastroenterology• Nursing• Neuroradiology
• Neuroscience• Anthropology, Cultural
and Biological• Nonlinear Dynamic
Systems Theory• Developmental
Psychobiology• Child Abuse• Injury Prevention• Community-based
Prevention
© 2008 Ronald G. Barr, MDCM, FRCPC
The Science:The Science:Four Lines of EvidenceFour Lines of Evidence
Shaking Your Baby
Is Dangerous
Crying
And Colic
Is NormalIs Normal
The most common stimulus
Prevention?
© 2008 Ronald G. Barr, MDCM, FRCPC
The ShakingThe ShakingThe ShakingThe Shaking
• Weak Neck Muscles• Normal Large Head
to Body ratio• Violent, sustained
shaking
Guthkelch (1971)Guthkelch (1971)
demonstrated the dangersdemonstrated the dangers
of shakingof shaking
© 2008 Ronald G. Barr, MDCM, FRCPC
Intracranial “Cascade” Intracranial “Cascade” from Shakingfrom Shaking
© 2008 Ronald G. Barr, MDCM, FRCPC
Mechanical Stresses During Mechanical Stresses During Shaking & Eye LesionsShaking & Eye Lesions
© 2008 Ronald G. Barr, MDCM, FRCPC
Traumatic RetinoschisisTraumatic RetinoschisisTraumatic RetinoschisisTraumatic Retinoschisis
© 2008 Ronald G. Barr, MDCM, FRCPC
Outcomes of Outcomes of Hospitalized CasesHospitalized Cases
• 20-35% die• Of the survivors, 65-80% have
significant longterm neurological and developmental abnormalities
• 40% of survivors are blind
© 2008 Ronald G. Barr, MDCM, FRCPC
Challenges:Challenges:Determining Determining occurrenceoccurrence
• Cases that never come to clinical attention?• “Missed” cases (~30% [Jenny et al 1999]
and “repetitive” cases (~30-70% [many authors]) imply that some children are shaken and never come to clinical attention
• The Gabbi and Michele story
© 2008 Ronald G. Barr, MDCM, FRCPC
Why crying in Why crying in normalnormal infants infants might be relevant to Shaken might be relevant to Shaken
Baby Syndrome?Baby Syndrome?
© 2008 Ronald G. Barr, MDCM, FRCPC
Four Lines of EvidenceFour Lines of Evidence
Shaking Your Baby
Is Dangerous
Crying
And Colic
Is NormalIs Normal
© 2008 Ronald G. Barr, MDCM, FRCPC
Different Lines of Evidence:Different Lines of Evidence:The Normalcy of CryingThe Normalcy of Crying
© 2008 Ronald G. Barr, MDCM, FRCPC
What is colic?What is colic? Defining features Defining features
(Gormally & Barr, 1997)(Gormally & Barr, 1997)
1. Age-dependent crying patterns (peak during 2nd month).
2. Associated behaviors (prolonged cry bouts, unsoothability, “pain facies”)
3. “Paroxysmal” (unpredictable)
© 2008 Ronald G. Barr, MDCM, FRCPC
Wessel’s “Rule of 3’s”Wessel’s “Rule of 3’s”
An infant has colic when s/he cries: > 3 hours/day > 3 days/week > 3 weeks
Wessel et al, “Paroxysmal fussing in infancy, sometimes called ‘colic.’” Pediatrics, 1954
© 2008 Ronald G. Barr, MDCM, FRCPC
Typical Assumption:Typical Assumption:Colic is an abnormality,Colic is an abnormality,or “something wrong” or “something wrong”
with the infant with the infant
© 2008 Ronald G. Barr, MDCM, FRCPC
Current Evidence-based Current Evidence-based Assumption:Assumption:
Colic and early increased Colic and early increased crying are crying are normalnormal,,
and there is and there is nothing nothing wrongwrong with the infant with the infant
© 2008 Ronald G. Barr, MDCM, FRCPC
What is colic?What is colic? Defining features Defining features
(Gormally & Barr, 1997)(Gormally & Barr, 1997)
1. Age-dependent crying patterns (peak during 2nd month).
2. Associated behaviors (prolonged cry bouts, unsoothability, “pain facies”)
3. “Paroxysmal” (unpredictable)
© 2008 Ronald G. Barr, MDCM, FRCPC
The “crying curve”The “crying curve”(Brazelton, 1962)(Brazelton, 1962)
Large differences
from infant to infant
© 2008 Ronald G. Barr, MDCM, FRCPC
““Peak Pattern” of Peak Pattern” of Early Crying BehaviorEarly Crying Behavior
Hunziker & Barr, Pediatrics 1986
© 2008 Ronald G. Barr, MDCM, FRCPC
Caregiving ContextsCaregiving Contexts
!Kung San Western Contact Constant Intermittent
Carry Constant Response to cry
Feeding “Continuous” “Pulse”
Posture Upright Supine
Responsivity Universal Occ. Non-response
© 2008 Ronald G. Barr, MDCM, FRCPC
Hourly Hourly Cry/Fret DurationCry/Fret Duration in !Kung San Infantsin !Kung San Infants
Barr, Konner et al DMCN 1991
Large differences
from infant to infant
© 2008 Ronald G. Barr, MDCM, FRCPC
““Distress Curves” have been Distress Curves” have been found in all non-human found in all non-human mammalian (i.e. breast mammalian (i.e. breast
feeding) species investigated.feeding) species investigated.
• Guinea pig pups (Pettyjohn, 1979)
• Infant rat pups (Hofer et al, 1999)
• Chimpanzees (Bard, 2000)
• Free-living Rhesus macaques (Barr et al, 2005)
© 2008 Ronald G. Barr, MDCM, FRCPC
Reasons for the Reasons for the Frustrating Properties of Frustrating Properties of
Colic and Early CryingColic and Early Crying
1. The crying curve
2.2. The unsoothable crying The unsoothable crying boutsbouts
© 2008 Ronald G. Barr, MDCM, FRCPC
Unsoothable bouts Unsoothable bouts are are unsoothable!unsoothable!
© 2008 Ronald G. Barr, MDCM, FRCPC
Unsoothable Crying BoutsUnsoothable Crying Boutsin London, Copenhagen, and with a in London, Copenhagen, and with a
“proximal” form of care“proximal” form of careInfants with Bouts of Unsoothable Crying
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
10 days 5 weeks 12 weeks
Age of Infants
Per
cen
tag
e o
f In
fan
ts
London Community
Copenhagen Community
Proximal Care
St James-Roberts, I., Alvarez, M., Csipke, E., Abramsky, T., Goodwin, J., Sorgenfrei, E. Infant crying and sleeping in London, Copenhagen, and when parents adopt a 'proximal' form of care. Pediatrics,2006.
© 2008 Ronald G. Barr, MDCM, FRCPCThe Period of PURPLE Crying is a registered trademark and all content is copyright protected. All rights reserved, Ronald G. Barr, MDCM and the National Center on Shaken Baby Syndrome (2004-2008)
In SummaryIn Summary
““Colic”Colic” is a manifestation of normal is a manifestation of normal behavioral developmentbehavioral development
““Colic”Colic” is the is the upper endupper end of a of a continuumcontinuum of crying behavior in normal infants of crying behavior in normal infants (like height: some infants are taller and (like height: some infants are taller and some are shorter)some are shorter)
““Colic”Colic” is not an is not an indicationindication of diseaseof disease in in the infant.the infant.
© 2008 Ronald G. Barr, MDCM, FRCPC
Clinical ImplicationsClinical Implications
1 2 3 4 5
Wessel’s criteria
“False positive” effective
“False negative” ineffective
© 2008 Ronald G. Barr, MDCM, FRCPC
Clinical ImplicationsClinical Implications
• If you do not take the curve into account, therapeutic interventions can be misinterpreted as effective when the are not effective, or ineffective when they are effective
• ALL infants experience the curve, and “organic causes” only move the infant “up” within the range of crying
© 2008 Ronald G. Barr, MDCM, FRCPC
Why normal infant Why normal infant crying is a “window crying is a “window of opportunity” to of opportunity” to
prevent SBSprevent SBS
© 2008 Ronald G. Barr, MDCM, FRCPC
““John’s story” illustrates…John’s story” illustrates…
• Age of baby, 7 weeks• Accumulated frustration over time• Wouldn’t stop crying as immediate stimulus• Took out his “anger and frustration”• “…and he stopped crying” – the positive
feedback cycle• Confession of shaking• No associated physical contact or trauma
© 2008 Ronald G. Barr, MDCM, FRCPC
Questionnaire Study of Questionnaire Study of Soothing Methods in Soothing Methods in
HollandHollandvan der Wal et al, Arch Dis Child, 1998van der Wal et al, Arch Dis Child, 1998
Techniques used to soothe infants:
1. Smother 2%2. Slap 3%
3.3. ShakeShake 5%5%
© 2008 Ronald G. Barr, MDCM, FRCPC
Runyan.Runyan. The challenges of assessing the The challenges of assessing the incidence of inflicted traumatic brain incidence of inflicted traumatic brain
injury: A world perspective.injury: A world perspective.Amer J Prev Med 2008;34 (4S)
“The impact of these private acts must be further studied as there may be other long-lasting and serious intracranial impacts that have not been characterized.”
© 2008 Ronald G. Barr, MDCM, FRCPC
Crying as a Stimulus for Shaken Crying as a Stimulus for Shaken Baby SyndromeBaby Syndrome
Danger of Danger of shaking shaking
an infantan infant
Normalcy of Normalcy of Increased Increased
Inconsolable Inconsolable CryingCrying
Crying as a Crying as a stimulus stimulus
to shakingto shaking
Early crying Early crying is the most is the most
commoncommon stimulus stimulus
for Shaken for Shaken Baby Baby
SyndromeSyndrome
© 2008 Ronald G. Barr, MDCM, FRCPC
The “crying curve” The “crying curve” (Brazelton, Pediatrics, 1962)(Brazelton, Pediatrics, 1962)Hypothesis:Hypothesis: IF crying was a
significant stimulus for sbs, THEN the pattern of age-
related incidence of sbs should be similar to the age-related
properties of the crying curve
© 2008 Ronald G. Barr, MDCM, FRCPC
Age-specific incidence of Age-specific incidence of hospitalizedhospitalized cases of SBS cases of SBS
(Barr, Trent et al Child Abuse & Neglect 2006)(Barr, Trent et al Child Abuse & Neglect 2006)
0
5
10
15
20
25
30
35
40
45
50
0 8 16 24 32 40 48 56 64 72 80
Age (weeks)
No
. of
ca
se
s
© 2008 Ronald G. Barr, MDCM, FRCPC
Age-specific Incidence ofAge-specific Incidence ofPublicly-reportedPublicly-reported Cases of SBS Cases of SBS
(Lee, Barr et al JDBP 2007)(Lee, Barr et al JDBP 2007)
0
20
40
60
80
100
120
0-4 5-8 9-12 13-16 17-20 21-24 25-28 29-32 33-36 37-40 41-44 45-48 49-52 53-56 57-60 61-64 65-68 69-72 73-76 77-80
Baby's Age (weeks)
No
. o
f C
ases
Crying Stimuli (n=166) All Stimuli (n=591)
© 2008 Ronald G. Barr, MDCM, FRCPC
Curves of Early Crying Curves of Early Crying and SBS Incidenceand SBS Incidence
1 2 3 4 5Months of Age
LagO
nset
Cry Curve
SBS Curve
© 2008 Ronald G. Barr, MDCM, FRCPC
Prevention:Prevention:The Period of PURPLE CryingThe Period of PURPLE Crying
Dangers Dangers of of
ShakingShaking
Normalcy Normalcy of Early of Early CryingCrying
Crying as Crying as Stimulus to Stimulus to
SBSSBS
PreventionPrevention??
© 2008 Ronald G. Barr, MDCM, FRCPC
Normal Crying as aNormal Crying as a“window of “window of
opportunity”opportunity”to prevent SBSto prevent SBS
• An opportunity to teach caregivers and all members of society about the normality of early increased normality of early increased cryingcrying;
• An opportunity to see SBS as the only only negative clinical consequencenegative clinical consequence for infants of early increased crying;
• Tells us whenwhen the teaching must occur to be effective.
© 2008 Ronald G. Barr, MDCM, FRCPC
The Period of PURPLE CryingThe Period of PURPLE Crying
Dangers Dangers of of
ShakingShaking
Normalcy Normalcy of Early of Early CryingCrying
Crying as Crying as Stimulus to Stimulus to
SBSSBS
Prevention: Prevention: Period of Period of PURPLE PURPLE CryingCrying
© 2008 Ronald G. Barr, MDCM, FRCPC
The properties of early The properties of early crying are extremely crying are extremely
frustrating to caregiversfrustrating to caregivers
© 2008 Ronald G. Barr, MDCM, FRCPC
The Period of PURPLE The Period of PURPLE CryingCrying
PP Peak of CryingPeak of Crying
UU UnexpectedUnexpected
R R Resists Resists SoothingSoothing
PP Pain-like FacePain-like Face
LL Long LastingLong Lasting
EE EveningEvening
© 2008 Ronald G. Barr, MDCM, FRCPC
Pathways to ShakingPathways to Shaking
Crying
Threshold
Frustration ……….Anger
Shaking
© 2008 Ronald G. Barr, MDCM, FRCPC
The Pathways to Prevention:The Pathways to Prevention:
AppropriatenessAppropriatenessof Adviceof Advice
Crying
Threshold
Frustration ……….Anger
Shaking
Appropriate Accurate Advice
© 2008 Ronald G. Barr, MDCM, FRCPC
The Importance of The Importance of Appropriate Information, Appropriate Information, Reassurance and AdviceReassurance and Advice
© 2008 Ronald G. Barr, MDCM, FRCPC
““If you were a good If you were a good mother, you would…”mother, you would…”
• Listen carefully to the cry and Listen carefully to the cry and learn to read what the cause of learn to read what the cause of the crying is so that you address the crying is so that you address the needs of your baby…the needs of your baby…
© 2008 Ronald G. Barr, MDCM, FRCPC
““If you were a good If you were a good mother, you would…”mother, you would…”
• Listen carefully to the cry and learn to read what the cause of the crying is so that you address the needs of your baby…
• Learn the right way to soothe Learn the right way to soothe your infant so that s/he can be your infant so that s/he can be calmed and not cry…calmed and not cry…
© 2008 Ronald G. Barr, MDCM, FRCPC
“…“…calming your baby the right calming your baby the right way” as a preventionway” as a prevention
• Fussing and crying may be reduced in response to care giving practice, but there is no evidence that unsoothable crying bouts are.
© 2008 Ronald G. Barr, MDCM, FRCPC
Tummi Time “Proven Tummi Time “Proven Remedy for Colic”Remedy for Colic”
© 2008 Ronald G. Barr, MDCM, FRCPC
Different Starting Different Starting AssumptionsAssumptions
Period of PURPLE CryingPeriod of PURPLE Crying:: In the first three to five months of life, there is a normal period of
increased crying, somesome of which is inconsolable crying that is notnot amenable to changes in care
giving techniques
“…“…calm your baby the right way”:calm your baby the right way”: There are ways that will always calm your baby if only you do them the right way (and there is no such thing
as inconsolable crying)
© 2008 Ronald G. Barr, MDCM, FRCPC
The Pathways to Shaking:The Pathways to Shaking:
Wrong Advice?Wrong Advice?
Crying
Threshold
Frustration ……….Anger
Shaking
InaccurateInappropriate
WrongAdvice
•Must not result in Must not result in more harm than goodmore harm than good
© 2008 Ronald G. Barr, MDCM, FRCPC
Period of Period of PURPLEPURPLE Crying Program: Crying Program: Achieving “Universal coverage” Achieving “Universal coverage”
• Educational, and attractiveattractive to parents of newborns on the first day of life
• Clear, memorable, salient, meaningful, positivepositive message
• Grade 3 level language• Multicultural• Valuable for all parents• Acceptable to Public Health Nurses
• no bottles, blankets, bumpers, etc.)
• Economical • Each parent receives a copyEach parent receives a copy to review
and to share with othersshare with others
© 2008 Ronald G. Barr, MDCM, FRCPC
Do education programs Do education programs change knowledge and change knowledge and
behavior?behavior?
© 2008 Ronald G. Barr, MDCM, FRCPC
The “Parents Helping The “Parents Helping Infants”Infants”StudiesStudies
• Randomized controlled trials in community settings in Vancouver and Seattle
Delivery systems: • Public health nurse home
visitors• Pediatric Offices• Prenatal Classes• On Maternity Wards
© 2008 Ronald G. Barr, MDCM, FRCPC
Testing the hypothesis that Testing the hypothesis that education materials can change education materials can change
knowledge and behaviorknowledge and behavior
RR
Infant safety intervention
Period of PURPLE Crying Intervention
© 2008 Ronald G. Barr, MDCM, FRCPC
Testing the hypothesis thatTesting the hypothesis that education materials can change education materials can change
knowledge and behaviorknowledge and behavior
BirthHome visit
Intervention at ~2 weeks
4-day diary at 5 weeks
of age
Knowledge and Behavior
Questionnaire at 2 months
© 2008 Ronald G. Barr, MDCM, FRCPC
Implementation Implementation HypothesisHypothesis
To make a long term sustained reduction in the number of cases of shaken baby syndrome, there will need to be a cultural change in the
way society understands(1) the meaning of increased crying in
early infancy, and(2) the danger of shaking as a response
to the frustration with that crying.
© 2008 Ronald G. Barr, MDCM, FRCPC
Preventing abusive head trauma Preventing abusive head trauma among infants and young children:among infants and young children:A hospital-based, parent education A hospital-based, parent education
program.program.Dias et al Pediatrics 2005: 115, 470-477Dias et al Pediatrics 2005: 115, 470-477
• Hospital-based parent education program• Intervention:
• Nurse provision of AAP leaflet, video (Portrait of Promise), commitment statement, posters on wards
• Follow-up telephone interviews at 7 months
© 2008 Ronald G. Barr, MDCM, FRCPC
Dias Dias modelmodel
ProcessProcess ContentContent
Process elements (7):
Teachable moment
Nurse delivery
PURPLEPURPLE and the Dias model and the Dias model
© 2008 Ronald G. Barr, MDCM, FRCPC
Dias Dias modelmodel
ProcessProcessPeriod of
PURPLE Crying
Materials
Process elements (7):
Teachable moment
Nurse delivery
PURPLEPURPLE Program Materials Program Materials with the Dias Modelwith the Dias Model
Dose 1 benefits from and builds on
the Dias process
© 2008 Ronald G. Barr, MDCM, FRCPCThe Period of PURPLE Crying is a registered trademark and all content is copyright protected. All rights reserved, Ronald G. Barr, MDCM and the National Center on Shaken Baby Syndrome (2004-2008)
““Three Dose” ProgramThree Dose” Program Dose 1:Dose 1: Maternity unitsMaternity units
Dose 2:Dose 2: Public Health, Family Public Health, Family Physicians, Nurse PractitionersPhysicians, Nurse Practitioners
Dose 3:Dose 3: Public Education CampaignPublic Education Campaign
Reinforcement and Reinforcement and Enhancements:Enhancements:
Emergency personnel, pediatrics, Emergency personnel, pediatrics, physicians, social work, community physicians, social work, community programs and all health professionals programs and all health professionals who work with parents of infantswho work with parents of infants
© 2008 Ronald G. Barr, MDCM, FRCPC
What do we know about What do we know about Shaken Baby Syndrome?Shaken Baby Syndrome?
• SBS has already been shown to:• be the most severemost severe form of child abuse,• be a preventablepreventable form of child abuse
(25-47% reduction),• have a clear stimulusclear stimulus (crying) and riskrisk
behaviorbehavior (shaking) leading to the abuse;
• have educational materials with demonstrated efficacydemonstrated efficacy in changing relevant knowledge and behavior (Period of PURPLE Crying).
© 2008 Ronald G. Barr, MDCM, FRCPC
The Pyramid of PreventionThe Pyramid of Prevention
All parents of new infantsAll parents of new infants
Parents of infants with ‘colic’ (20%)Parents of infants with ‘colic’ (20%)
Health care providersHealth care providers
Parents lacking confidence (10%)Parents lacking confidence (10%)
Neglected infantsNeglected infants
Physically abused & shaken infantsPhysically abused & shaken infants
Homicide victimsHomicide victims
General publicGeneral public
Temporary care givers/ family membersTemporary care givers/ family members