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The Power of Stories Over Statistics: Illustrations From Neonatal Jaundice and Infant Airplane Safety
The Power of Stories Over Statistics: Illustrations From Neonatal Jaundice and Infant Airplane Safety
\sabbatical\stories&StatsForExeter.ppt
Overview
Introduction
Jaundice in newborns and kernicterus
Infant safety seats on airplanes
Stories vs Statistics; Politics and Risk
research
Possible approaches and
recommendations
Questions and discussion
Idealized public health decision
making
Recognize resources are limited
Estimate the number of people who would
benefit, and how much, from various courses
of action
Select course of action with highest expected
benefit
Alternative basis for decisions: stories
Jaundice --Background 1
Bilirubin: Yellow breakdown product of heme
(from red blood cells)
Jaundice: Yellow color of whites of eyes and
skin due to high bilirubin. Usually indicates
liver or blood disease, but generally normal in
newborns
Hemolysis: Destruction of red blood cells
Kernicterus: Rare, severe, permanent brain
damage from very high bilirubin levels
Jaundice --Background 2
Phototherapy:
Shining light on the
babies skin -- helps
lower bilirubin levels
Exchange
transfusion: replace
baby’s blood with
donor blood
Jaundice – Background 3
Exchange transfusion for Rh disease 1950s
much less kernicterus
Phototherapy 1970s
TN a resident in pediatrics 1980-83
– Phototherapy for Total Serum Bilirubin (TSB) > 14-
15 mg/dl (240 uMol/L)
– Exchange transfusion for TSB > 20 mg/dl (340
uMol/L)
– Beginning of AIDS epidemic
Watchko and Oski’s “Vigintiphobia” article
(1983)*
N PT % PT ET % ET
1992-3 6499 514 7.9% 15 0.23%
1995-6 8650 251 2.9% 3 0.03%
30
25
20
15
10
5
0
< 1984 84-86 87-89 90-92 93-95 96-98 99-02
http://www.pickonline.org/presentation.ppt, Year of Birth
accessed 7/10/03
BIND CENTER - Pennsylvania Hospital
Concern about Return of
Kernicterus
Brown and Johnson registry: 90 cases
in 15 years in the US
Northern California Kaiser Permanente
– No cases in 111,000 births, 1995-8
– No cases found in 1991-4 (N~119,000)
– BUT: Evidence of increase in babies with
very high bilirubin levels 1999-2003.
Deaths from Kernicterus (773.4,
774.7), < 1 year-olds, USA*
Crude
Death Death
Year Count Population Rate/ 100K
(-9%)
Return visit and outcome
Next day, bilirubin 34.6 mg/dl Outcome:
Kernicterus (?)
Verdict for defense in malpractice suit,
settled on appeal
Same day: father diagnosed with spine
tumor, misdiagnosed as benign
Parents of Infants and Children
with Kernicterus (PICK)
www.kernicterus.org
“Never doubt that a small group of
thoughtful, committed citizens can change
the world. Indeed, it's the only thing that
ever has.”
NEWS RELEASE
JOINT COMMISSION ON ACCREDITATION OF HEALTHCARE
ORGANIZATIONS
5.00
0.16
4.00
0.14
3.00
0.12
2.00
0.10
0.08 1.00
0.06 0.50
0.25
0.04 0.00
0.02 -0.25
0.00
0.20 0.36 0.52 0.68 0.84 1.00
Nader R, Smith WJ. Collision course: the truth about airline safety. Blue
Ridge Summit, PA: TAB Books, 1994. Cited by Beshai D. Arch Ped Adol med
2003;157:953-4
Stories: UAL Flight 232: Jan Brown-
Lohr
Child Restraint on Airplanes:
Summary
Good data
– Very little benefit
– Very high cost per benefit
– May cause net harm
Notice of Proposed Rule-making issued by
FAA in 2001
Decision NOT to change rule 8/25/05
Victory for data?
AP Story: NTSB on FAA Ruling
"During takeoff, landing and turbulence,
adults are required to be buckled up,
baggage and coffee pots are stowed,
computers are turned off and put away,
yet infants and toddlers need not be
restrained," [NTSB Acting Chair]
Rosenker said in a statement.
Miller, L. http://homelandsecurity.osu.edu/focusareas/transportation.html
accessed 9/4/05
What makes stories powerful?
More interesting than numbers
More understandable than numbers
Emotional connection to story teller (a
real person,” not scientific or political
establishment)
Passion, sustained commitment of
story teller
Stories
““Humans are primates who tell stories.”
Stephen Jay Gould, PhD
12%
10%
8%
6%
4%
2%
0%
-2%
-4%
1982
1983
1984
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
% Change in Passenger Enplanements
% Change in Passenger Car and Light Truck Miles Traveled
Passenger Car and Light Truck Fatalities and Aircraft
Passenger Enplanements, 1980-2002
45,000
750,000,000
40,000
650,000,000
Enplanements
35,000
Fatalities
550,000,000
30,000
450,000,000
350,000,000 25,000
250,000,000 20,000
1980
1981
1982
1983
1984
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
Domestic Passenger Enplanements
Passenger Car and Light Truck Occupant Fatalities
Motor Vehicle Occupants Under 5 Years of Age
Killed in Crashes, 2000-2002
600 539
513
500 472
400 350
317
291
300
179 180 168
200
100
0
2000 2001 2002
Total All Types Passenger Cars Light Trucks
· Totals include crashes involving passenger cars, light trucks, large trucks,
motorcycles, buses, and other/unknow n vehicle types.
· Data available from the National Highw ay Traffic Safety Administration at
http://w w w -nrd.nhtsa.dot.gov/pdf/nrd-30/NCSA/TSFAnn/TSF2002Final.pdf
Children Under 5 Years Old
Road fatalities to all vehicle occupants
under 5 years old decreased 12.4%
between 2000 and 2002.
Injuries decreased 11.9% between 2000
and 2002.
Estimated resident population of
children under 5 years old increased
1.9% between 2000 and 2002.
Summary
Even in extreme cases, the historic
relationship between diversion from air
travel and increased risk of fatality or
injury in highway accidents is not clearly
apparent.
Accident risk is not evenly distributed
among all drivers, vehicle types, and trip
conditions.
No evidence was found to suggest an
increased risk for children under 5 years
old.
Additional Application:
Pseudodisease
Pseudodisease: disease that looks just
like real disease pathologically but
would cause no problems
Identified with screening tests, causing
net harm
Can’t tell from disease in an individual
patient
Hard for people to grasp because there
are no stories
Alternative story line
Villains -- emotional, irrational,
nonscientific people and for-profit
corporations
Heroes -- rational, scientific, impartial
researchers who do not accept industry
money
Moral: follow the money, keep the
broadest possible perspective!
Information for Parents: The
Jaundiced Baby
Jaundice in Newborns and its
Treatment
About 60% of newborn infants in the
United States are jaundiced, that is
they look yellow. Excessive jaundice in
newborn infants may cause brain
damage.
www.kernicterus.org
The Nuclear Non Proliferation Treaty,
Article VI
http://disarmament.un.org:8080/TreatyStatus.nsf
What does if mean if a treaty is
ratified?
Article VI, U.S. Constitution:
– “This Constitution... and all treaties made, or
which shall be made, under the authority of
the United States, shall be the supreme law of
the land; and the judges in every state shall be
bound thereby...
25-48 hrs 12 15 20 25
49-72 hrs 15 18 25 30
>72 hrs 17 20 25 30
Reemergence of Kernicterus In Babies Discharged As
Healthy In 1990s:
Review of 5 Decades of Reports in the Literature.
Vinod K. Bhutani and Lois H. Johnson
N=154
Case Reports per Each Year
12 Plus
new
10 Cases
8
6
4
2
0
53-62 683-72 73-82 83-85 86-88 89-91 92-94 95-97 98-01
Johnson LH, Bhutani VK, Brown AK. J Pediatr 2002; 140: 396-403
How common is kernicterus?
Pilot kernicterus registry: 90 cases in 15
years in the US
Northern California Kaiser Permanente
– No cases in 111,000 births, 1995-8. (11 had TSB
> 30 mg/dl1 )
– No cases found yet in 119,000 births, 1991-4
– ? 2 potential cases 2003?
California Cerebral Palsy Project2
– 1 case in 155,636.
– (Total of 192 cases of CP in that study.)
Denmark, 1994-8 ~1/65,0003
Pathophysiology
MMWR Case Reports: missing
information
#2 (Cal Sheridan) The follow-up visit
when OM diagnosed
#3 The child has congenital nephrotic
syndrome -- a low albumin probably
contributed to risk
#4 At 4 days Mother declined a home
health visit and reported that jaundice
appeared to be fading