Transcript One Lens Is Not Enough - University of New Mexico

Robert Wood Johnson Foundation
Center for Health Policy at UNM
FALL 2008 LECTURE SERIES
Inter-/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 Pediatrics
University 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 road:
How science can be translated
into policy for prevention of
Shaken Baby Syndrome
Ronald G. Barr, MA, MDCM, FRCPC
Director, Centre for Community Child Health Research, CFRI
Canada Research Chair in Community Child Health Research
Vancouver, BC, Canada
RWJ Foundation Center for Health Policy
University of New Mexico
November 13, 2008
© 2008 Ronald G. Barr, MDCM, FRCPC
Disciplines/Methodologies Necessary
for SBS Prevention Program
•
•
•
•
Pediatrics
Primary Care Practice
Epidemiology
Clinical Research
Design
• Child Developmental
Psychology
• Statistics
• Gastroenterology
• Nursing
©•2008
Ronald G. Barr, MDCM, FRCPC
Neuroradiology
• Neuroscience
• Anthropology, Cultural
and Biological
• Nonlinear Dynamic
Systems Theory
• Developmental
Psychobiology
• Child Abuse
• Injury Prevention
• Community-based
Prevention
The Science:
Four Lines of Evidence
Crying
And Colic
Is Normal
Shaking
Your Baby
Is
Dangerous
The most
common stimulus
© 2008 Ronald G. Barr, MDCM, FRCPC
Prevention
?
The Shaking
• Weak Neck Muscles
• Normal Large Head
to Body ratio
• Violent, sustained
shaking
Guthkelch (1971)
demonstrated the dangers
of shaking
© 2008 Ronald G. Barr, MDCM, FRCPC
Intracranial “Cascade”
from Shaking
© 2008 Ronald G. Barr, MDCM, FRCPC
Mechanical Stresses During
Shaking & Eye Lesions
© 2008 Ronald G. Barr, MDCM, FRCPC
Traumatic Retinoschisis
© 2008 Ronald G. Barr, MDCM, FRCPC
Outcomes of
Hospitalized 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:
Determining occurrence
• 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 normal infants
might be relevant to Shaken
Baby Syndrome?
© 2008 Ronald G. Barr, MDCM, FRCPC
Four Lines of Evidence
Crying
And Colic
Is Normal
© 2008 Ronald G. Barr, MDCM, FRCPC
Shaking
Your Baby
Is
Dangerous
Different Lines of Evidence:
The Normalcy of Crying
© 2008 Ronald G. Barr, MDCM, FRCPC
What is colic?
Defining features
(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”
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:
Colic is an abnormality,
or “something wrong” with
the infant
© 2008 Ronald G. Barr, MDCM, FRCPC
Current Evidence-based
Assumption:
Colic and early increased
crying are normal,
and there is nothing wrong
with the infant
© 2008 Ronald G. Barr, MDCM, FRCPC
What is colic?
Defining features
(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”
(Brazelton, 1962)
Large
differences
from infant to
infant
© 2008 Ronald G. Barr, MDCM, FRCPC
“Peak Pattern” of Early
Crying Behavior
Hunziker & Barr,
Pediatrics 1986
© 2008 Ronald G. Barr, MDCM, FRCPC
Caregiving Contexts
!Kung San Western
Contact
Constant
Intermittent
Carry
Constant
Response to cry
Feeding
“Continuous”
“Pulse”
Posture
Upright
Supine
Responsivity Universal
© 2008 Ronald G. Barr, MDCM, FRCPC
Occ. Non-response
Hourly Cry/Fret Duration in
!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
found in all non-human
mammalian (i.e. breast feeding)
species investigated.
•
•
•
•
Guinea pig pups (Pettyjohn, 1979)
Infant rat pups (Hofer et al, 1999)
Chimpanzees (Bard, 2000)
Free-living Rhesus macaques
2005)
© 2008 Ronald G. Barr, MDCM, FRCPC
(Barr et al,
Reasons for the
Frustrating Properties of
Colic and Early Crying
1. The crying curve
2. The unsoothable crying
bouts
© 2008 Ronald G. Barr, MDCM, FRCPC
Unsoothable bouts
are unsoothable!
© 2008 Ronald G. Barr, MDCM, FRCPC
Unsoothable Crying Bouts
in London, Copenhagen, and with a
“proximal” form of care
Infants with Bouts of Unsoothable Crying
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.
50%
London Community
45%
Copenhagen Community
Proximal Care
40%
Percentage of Infants
35%
30%
25%
20%
15%
10%
5%
0%
10 days
© 2008 Ronald G. Barr, MDCM, FRCPC
5 weeks
Age of Infants
12 weeks
In Summary
“Colic” is a manifestation of normal
behavioral development
“Colic” is the upper end of a continuum
of crying behavior in normal infants
(like height: some infants are taller and
some are shorter)
“Colic” is not an indication of disease in
the infant.
TheMDCM,
Period ofFRCPC
PURPLE Crying is a registered trademark and all content is copyright protected.
© 2008 Ronald G. Barr,
All rights reserved, Ronald G. Barr, MDCM and the National Center on Shaken Baby Syndrome (2004-2008)
Clinical Implications
“False positive” effective
Wessel’s
criteria
“False negative”
ineffective
1
© 2008 Ronald G. Barr, MDCM, FRCPC
2
3
4
5
Clinical 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
crying is a “window
of opportunity” to
prevent SBS
© 2008 Ronald G. Barr, MDCM, FRCPC
“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
Soothing Methods in Holland
van der Wal et al, Arch Dis Child, 1998
Techniques used to soothe infants:
1. Smother
2. Slap
3. Shake
© 2008 Ronald G. Barr, MDCM, FRCPC
2%
3%
5%
Runyan. The challenges of assessing the
incidence of inflicted traumatic brain
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 longlasting and serious
intracranial
impacts that have
not been
characterized.”
© 2008 Ronald G. Barr, MDCM, FRCPC
Crying as a Stimulus for Shaken
Baby Syndrome
Danger of
shaking an
infant
Normalcy of
Increased
Inconsolable
Crying
© 2008 Ronald G. Barr, MDCM, FRCPC
Crying as a
stimulus
to shaking
Early crying is
the most
common
stimulus for
Shaken
Baby
Syndrome
The “crying curve”
(Brazelton, Pediatrics, 1962)
Hypothesis: IF crying was a
significant stimulus for sbs,
THEN the pattern of agerelated 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
hospitalized cases of SBS
(Barr, Trent et al Child Abuse & Neglect 2006)
50
45
40
No. of cases
35
30
25
20
15
10
5
0
0
8
16
24
32
40
Age (weeks)
© 2008 Ronald G. Barr, MDCM, FRCPC
48
56
64
72
80
Age-specific Incidence of
Publicly-reported Cases of SBS
(Lee, Barr et al JDBP 2007)
120
100
No. of Cases
80
60
40
20
0
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)
Crying Stimuli (n=166)
© 2008 Ronald G. Barr, MDCM, FRCPC
All Stimuli (n=591)
Curves of Early Crying and
SBS Incidence
Lag
Cry Curve
Onset
SBS Curve
1
© 2008 Ronald G. Barr, MDCM, FRCPC
2
3
4
Months of Age
5
Prevention:
The Period of PURPLE Crying
Dangers of
Shaking
Normalcy
of Early
Crying
© 2008 Ronald G. Barr, MDCM, FRCPC
Crying as
Stimulus to
SBS
?
Prevention
Normal Crying as a
“window of opportunity”
to prevent SBS
• An opportunity to teach caregivers and all
members of society about the normality
of early increased crying;
• An opportunity to see SBS as the only
negative clinical consequence for
infants of early increased crying;
• Tells us when the teaching must occur to
be effective.
© 2008 Ronald G. Barr, MDCM, FRCPC
The Period of PURPLE Crying
Dangers of
Shaking
Normalcy
of Early
Crying
© 2008 Ronald G. Barr, MDCM, FRCPC
Crying as
Stimulus to
SBS
Prevention:
Period of
PURPLE
Crying
The properties of early crying
are extremely frustrating to
caregivers
© 2008 Ronald G. Barr, MDCM, FRCPC
The Period of PURPLE
Crying
P
U
R
P
L
Resists Soothing
E
Evening
Peak of Crying
Unexpected
Pain-like Face
Long Lasting
© 2008 Ronald G. Barr, MDCM, FRCPC
Pathways to Shaking
Shaking
Threshold
Frustration ……….Anger
Crying
© 2008 Ronald G. Barr, MDCM, FRCPC
The Pathways to Prevention:
Appropriateness
of Advice
Shaking
Threshold
Appropriate
Accurate
Advice
Frustration ……….Anger
Crying
© 2008 Ronald G. Barr, MDCM, FRCPC
The Importance of
Appropriate Information,
Reassurance and Advice
© 2008 Ronald G. Barr, MDCM, FRCPC
“If you were a good
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…
© 2008 Ronald G. Barr, MDCM, FRCPC
“If you were a good
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 your
infant so that s/he can be calmed
and not cry…
© 2008 Ronald G. Barr, MDCM, FRCPC
“…calming your baby the right
way” 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 Remedy
for Colic”
© 2008 Ronald G. Barr, MDCM, FRCPC
Different Starting Assumptions
“…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)
Period of PURPLE Crying: In the first three to
five months of life, there is a normal period of
increased crying, some of which is inconsolable
crying that is not amenable to changes in care
giving techniques
© 2008 Ronald G. Barr, MDCM, FRCPC
The Pathways to Shaking:
Wrong Advice?
Shaking
Inaccurate
Inappropriate
Wrong
Advice
Threshold
Frustration ……….Anger
Crying
•Must not result in
more harm than good
© 2008 Ronald G. Barr, MDCM, FRCPC
Period of PURPLE Crying Program:
Achieving “Universal coverage”
• Educational, and attractive to parents of
newborns on the first day of life
• Clear, memorable, salient, meaningful, positive
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 copy to review and to
share with others
© 2008 Ronald G. Barr, MDCM, FRCPC
Do education programs
change knowledge and
behavior?
© 2008 Ronald G. Barr, MDCM, FRCPC
The “Parents Helping Infants”
Studies
• 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
education materials can change
knowledge and behavior
Period of PURPLE
Crying Intervention
R
Infant safety intervention
© 2008 Ronald G. Barr, MDCM, FRCPC
Testing the hypothesis that
education materials can change
knowledge and behavior
Home visit
Birth Intervention
at ~2 weeks
© 2008 Ronald G. Barr, MDCM, FRCPC
4-day diary
at 5 weeks
of age
Knowledge and
Behavior
Questionnaire at 2
months
Implementation
Hypothesis
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
among infants and young children:
A hospital-based, parent education
program.
Dias 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
PURPLE and the Dias model
Process elements (7):
Dias
model
Teachable moment
Nurse delivery
Process
© 2008 Ronald G. Barr, MDCM, FRCPC
Content
PURPLE Program Materials
with the Dias Model
Process elements (7):
Dias
model
Dose 1
benefits from
and builds on
the Dias
process
Teachable moment
Nurse delivery
Process
Period of
PURPLE Crying
Materials
© 2008 Ronald G. Barr, MDCM, FRCPC
“Three Dose” Program
Dose 1: Maternity units
Dose 2: Public Health, Family
Physicians, Nurse Practitioners
Dose 3: Public Education Campaign
Reinforcement and Enhancements:
Emergency personnel, pediatrics,
physicians, social work, community
programs and all health professionals
who work with parents of infants
TheMDCM,
Period ofFRCPC
PURPLE Crying is a registered trademark and all content is copyright protected.
© 2008 Ronald G. Barr,
All rights reserved, Ronald G. Barr, MDCM and the National Center on Shaken Baby Syndrome (2004-2008)
What do we know about
Shaken Baby Syndrome?
• SBS has already been shown to:
• be the most severe form of child abuse,
• be a preventable form of child abuse (2547% reduction),
• have a clear stimulus (crying) and risk
behavior (shaking) leading to the abuse;
• have educational materials with
demonstrated efficacy in changing relevant
knowledge and behavior (Period of PURPLE
Crying).
© 2008 Ronald G. Barr, MDCM, FRCPC
The Pyramid of Prevention
Homicide victims
Physically abused & shaken infants
Neglected infants
Parents lacking confidence (10%)
Health care providers
Parents of infants with ‘colic’ (20%)
Temporary care givers/ family members
All parents of new infants
General public
© 2008 Ronald G. Barr, MDCM, FRCPC