the power of stories over statistics: illustrations from neonatal jaundice and infant airplane...
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The Power of Stories over Statistics: Illustrations from Neonatal Jaundice
and Infant Airplane Safety
Thomas B. Newman MD, MPHProfessor of Epidemiology and Biostatistics and Pediatrics, University of California, San
Francisco
\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)*
*Watchko JF, Oski FA. Pediatrics 1983;71:660-63
Jaundice--Current issues We know jaundice used to be over-treated “Kinder, gentler” approach (1992) and AAP
jaundice guideline (1994) -- far less treatment– Phototherapy for TSB >= 20 mg/dL– Exchange for TSB > 25-30 mg/dL
Concern about the return of kernicterus; evidence is poor
New diagnostic technologies Formation of PICK, a parents group; push for
universal bilirubin screening
Phototherapy (PT) and Exchange Transfusion (ET) in 2 Hospitals in Israel Pre- and Post AAP guideline*
N PT % PT ET % ET1992-3 6499 514 7.9% 15 0.23%1995-6 8650 251 2.9% 3 0.03%
*Seidman DS et al. Acta Paediatr 2001;90:292-5
• 63% reduction in phototherapy
• 85% reduction in exchange transfusions
Year of Birth< 1984 84-86 87-89 90-92 93-95 96-98 99-02N
umbe
r of
Ker
nict
erus
Cas
es
0
5
10
15
20
25
30
BIND CENTER - Pennsylvania Hospital
PILOT KERNICTERUS REGISTRYConfirmed Cases of Acute Kernictrerus (Voluntary Reporting)
“Healthy” Term and Near Term Infants Born in 34 States
http://www.pickonline.org/presentation.ppt, accessed 7/10/03
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*
YearDeath Count Population
Crude Death Rate/ 100K
1979 2 3,494,398 0.1 (UNRELIABLE)1980 2 3,612,258 0.1 (UNRELIABLE)1981 1 3,629,238 0 (UNRELIABLE)1982 2 3,680,537 0.1 (UNRELIABLE)1983 1 3,638,933 0 (UNRELIABLE)1984 1 3,669,141 0 (UNRELIABLE)1985 1 3,760,561 0 (UNRELIABLE)
*CDC Wonder, Accessed 7/10/03
Deaths from Kernicterus (773.4, 774.7), < 1 year-olds, USA*
*CDC Wonder, Accessed 7/10/03, 9/4/05
Deaths Population Rate /100 K1979-88 10 36,960,517 0.03 1989-02 9 51,966,560 0.02
New Diagnostic Technologies
Cost: $4000 + $7/use
Cost: $19,000 + $15 per use
New Diagnostic Technologies -2
Stories: Cal Sheridan
36-37 wk 2900 g boy b.t.a. 35 y.o. G1 O+ Mom
Nursing Notes, Age 17 hours
No bilirubin level sent.
Clinic Visit, 4.5 days
(-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.”
Margaret Mead (1901 - 1978) US anthropologist
JCAHO Sentinel Alert
NEWS RELEASEJOINT COMMISSION ON ACCREDITATION OF HEALTHCARE
ORGANIZATIONS
JOINT COMMISSION ISSUES ALERT: TREATABLE BLOOD DISORDER
PUTS BABIES AT RISK FOR BRAIN DAMAGE, DEATH
JCAHO Sentinel Alert -2Sentinel Event Alert • Issue 18 - April 2001
Kernicterus threatens healthy newbornsKernicterus is a condition of newborns that leads to severely disabling brain damage or death. It results from hyperbilirubinemia that can be caused by a number of factors. Kernicterus is preventable with techniques currently available.
"This is probably happening more than clinicians know about. With these recent cases, risk assessments were
inadequate and unreliable, and bilirubin levels were not measured--or measured in time."
- Sue Sheridan
1 /Kernicterus in Full-Term Infants --- United States, 1994--1998
“In early 2001, a national support group for parents of children with kernicterus conducted a survey on kernicterus. A convenience sample of 15 families was identified by word-of-mouth or through the Internet... Among the sample families, seven did not complete the questionnaire, four had children who did not meet the case definition, and the remaining four had children who did meet the case definition..”
Neonatal jaundice/kernicterus summary No dispute about former over-treatment or
current treatment thresholds No good data on current incidence of
kernicterus, but it is rare Definition of the problem and proposed
solution strongly influenced by 1 story (assisted by industry funding)
Weak data, powerful stories Universal bilirubin screening is coming
Press Release
AAP CALLS FOR AN END TO LAP TRAVEL FOR CHILDREN
ON PLANES
AMERICAN ACADEMY OF PEDIATRICS
Committee on Injury and Poison Prevention
Pediatrics 2001;108:1218-1221
Ending lap travel: Background
Children under 2 can ride on parent’s lap with no ticket
July 19, 1989: UAL #232 crash at Sioux City, Iowa. Unrestrained infant dies.
1990: US NTSB recommends universal restraint
July 12, 1994: Another “lap child” dies in crash, NTSB urges FAA to require infant restraint
FAA Study, report to Congress, 1995 Methods
– Detailed analyses of survivability of previous crashes
– Models of price-sensitivity of travel decisions Results:
– Infant restraint would prevent maximum of 5 infant deaths over 10 years
– Net increase of 82 deaths over 10 years due to diversion to less safe modes of travel
Rejected as “flawed” by NTSB and Congress
Effects and Costs of Requiring Child Restraint Systems for Infants Traveling on Commercial
Airplanes*
Benefits: similar to FAA (6 deaths in 10 years) Risks: less than FAA when likely
characteristics of drivers and driving considered (Net increase in deaths over 10 years 0-30 vs 82 )
Costs: still high
*Newman TB, Johnston B, Grossman D. Arch Pediatr Adol Med 2003;157:969-74
Deaths caused or prevented
Relative Risk of Auto Death for Families
Prop
ortio
n C
hoos
ing
to D
rive
0.20 0.36 0.52 0.68 0.84 1.00
0.20
0.18
0.16
0.14
0.12
0.10
0.08
0.06
0.04
0.02
0.00
Increased deaths
Decreased deaths
-0.250.00
0.250.50
1.00
2.00
3.00
4.00
5.00
Estimated Costs
Assume no diversion to less safe modes of travel
*Assumes 3% discounting
Cost per round trip
Cost per life saved
Cost per life-year saved*
$200.00 $1,283,594,063 $42,786,469 $10.00 $64,179,703 $2,139,323
$1.00 $6,417,970 $213,932 $0.25 $1,604,493 $53,483
Congressional Testimony: Cost effectiveness
Congressman Geren: “... five million enplanements. Say it only costs $20. That's $100 million...If we gave you $100 million and you were entrusted with saving lives, where would you apply it, top priority?”
Barry Sweedler, Director, Office of Safety Recommendations, NTSB: “There is a long list of safety issues that need addressing, and I think it's probably best for us to try to lay out what the issues are and try not to prioritize which safety issue is more important than other safety issues...this seems to be one of those areas where it just seems to make common sense to go ahead and take that extra step.”
Congressional Testimony: Evidence
Coming into Washington we ran into some turbulence around some thunderstorms and there were some other lap children that the mothers were having trouble restraining. Many of them were crying and screaming. The little kid in the safety seat slept through the whole thing.
So I think there is more than enough evidence that substantiates what we're trying to do.
The question, I think, Mr. Chairman, comes down to how many more children must die, how many more have to be hurt before we reach the threshold of FAA's ghoulish cost/benefit ratio?
--Congressman Jim Lightfoot, Iowa
“Real” vs “Theoretical” Children “The argument in support of the FAA’s
resistance to the NTSB...is unreasonable on its face and ridiculous in its justification. It protects theoretical children driving in cars at the expense of real flesh-and blood infants whose safety is unquestionably compromised when flown as a lap-baby”
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: Plane safety seat ruling unchanged for children http://www.buffalonews.com/editorial/20050827/1073311.asp, accessed 9/4/05
AP Story –FAA Response
FAA spokesman Greg Martin said requiring the seats would harm more children than it would protect. "A lap child held firmly by a parent doesn't result in second- or third-degree burns like an unsecured pot of coffee," Martin said.
Three children who sat in their parents' laps were among the 309 who survived the fiery crash of an Air France Airbus A340 after it overshot the Toronto runway, Martin noted.
Miller, L: Plane safety seat ruling unchanged for children http://www.buffalonews.com/editorial/20050827/1073311.asp, accessed 9/4/05
Babies caught up in 'no-fly' confusion WASHINGTON --Infants have been stopped
from boarding planes at airports throughout the U.S. because their names are the same as or similar to those of possible terrorists on the government's "no-fly list."
It sounds like a joke, but it's not funny to parents who miss flights while scrambling to have babies' passports and other documents faxed...
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
“Humans are primates whose cognitive capacity shuts down in the absence of a story.”
Robyn M. Dawes, PhDCognitive psychologistAuthor: “Everyday
Irrationality”
Stories and Politics “Rather than understanding policy-makers as
problem-solvers who apply objective, scientific, and value-free methods to cure society’s ills...think of policy-makers as performers who seek to persuade an audience...
A policy argument, in consequence, tells a story: it provides a setting, points to the heroes and villains, follows a plot, suggests a solution, and, most importantly, is guided by a moral.*
*John Adams and Michael Thompson. Taking account of societal concerns about risk: Framing the problem. A report for the Health and Safety Executive.
Risk perceptions and preferences Involuntary risks perceived as worse than
voluntary risks Identifiable victims/lives saved valued much
more than statistical lives saved– Cure valued more than prevention– Preventing rare disease valued more than
decreasing common disease even if fewer lives saved
Equity is valued
Jaundice Story
Heroic PICK mothers fighting ignorance and managed care efforts to save money
Solution: Universal bilirubin screening Moral: need to protect the vulnerable Risk involuntary: PICK moms not warned
that jaundice can cause brain damage. Identifiable victims: KI considered separately
from Cerebral Palsy
Safety Seat Story Story -- heroic, dedicated flight attendants,
congressmen against unfeeling bureaucrats Solution: Require universal child restraint Risk is both involuntary (to infant and other
passengers) and voluntary (parents decide) Plane crash victims are identifiable; car crash
victims an anonymous “drop in the bucket” Equity: Infants deserve same level of
protection
Possible approaches/ Recommendations -1 Divide and conquer Recognize and publicize the problem Get stories (and story tellers) that
support best public health choices– Harder to get stories that support NOT
doing something that is only too expensive Avoid polarization -- meet with the
opposition.
Possible approaches/ Recommendations -2
Focus on deliberative bodies and opinion leaders
Try to discuss how decisions should be made separately from the specifics of a particular decision
Get passionate about good decision making
Year-over-year Changes in Passenger Enplanements and Passenger Car and Light Truck Miles Traveled, 1981-2002
-8%
-6%
-4%
-2%
0%
2%
4%
6%
8%
10%
12%19
81
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
Air Traffic Controller Strike Gulf War
Sept. 11, 2001
Passenger Car and Light Truck Fatalities and Aircraft Passenger Enplanements, 1980-2002
250,000,000
350,000,000
450,000,000
550,000,000
650,000,000
750,000,000
19
80
19
81
19
82
19
83
19
84
19
85
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20
00
20
01
20
02
En
pla
nem
ents
20,000
25,000
30,000
35,000
40,000
45,000
Fat
alit
ies
Domestic Passenger Enplanements
Passenger Car and Light Truck Occupant Fatalities
Motor Vehicle Occupants Under 5 Years of Age Killed in Crashes, 2000-2002
539513
472
350317
291
179 180 168
0
100
200
300
400
500
600
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 Traff ic 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!
www.kernicterus.org
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.
The Nuclear Non Proliferation Treaty, Article VI
“Each of the Parties to the Treaty undertakes to pursue negotiations in good faith on effective measures relating to cessation of the nuclear arms race at an early date and to nuclear disarmament, and on a treaty on general and complete disarmament under strict and effective international control.”
Signed by the U.S. 1968, ratified 1969
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...
– “The Senators and Representatives...and the members of the several state legislatures, and all executive and judicial officers, both of the United States and of the several states, shall be bound by oath or affirmation, to support this Constitution...”
AAP Guidelines (1994)
Total Serum Bilirubin, mg/dL
Age(hrs)
ConsiderPhoto-therapy
Photo-therapy
ExchangeTransfusionif Intensive
PhototherapyFails
ExchangeTransfusion
and IntensivePhototherapy
24 hrs --- --- --- ---
25-48 hrs 12 15 20 2549-72 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
0
2
4
6
8
10
12
53-62 83-72 73-82 83-85 86-88 89-91 92-94 95-97 98-01
Calender Years
Case
Rep
orts
per
Eac
h Ye
ar
Plus new
Cases
PAS Meeting 2003: Abstract
N=154
http://www.pickonline.org/presentation.ppt, accessed 7/10/03
66
Kernicterus Registry: Definition and Eligibility*
Acute phase kernicterus– Irritability and hypertonia with early retrocolis and
opisthotonus and drowsiness, poor feeding, high-pitched cry, alternating tone or failed ABR
Chronic kernicteric sequelae: Abnormality in at least 2 of the following, at least one severe:– Extrapyramidal movement disorder– Gaze abnormalities– Auditory disturbances– Intellectual deficits– Enamel dysplasia of deciduous teeth
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
1 Newman TB et al. Pediatrics 2003;111:1303-11
2 Cummins SC. Personal communication. 3Ebbesen F Acta Paediatr 2000;89:1-5
How Common Is Kernicterus? Problems:
– No uniform surveillance– Trade-off between sensitivity and specificity in
case definition – no standard– Diagnosis of kernicterus often delayed, uncertain
and contentious Probably between 1/100,000 and 1/250,000 =
16-40 cases per year in the US MUCH more common in some other
countries, especially in Africa– Southern Nigeria: 9/20 infants readmitted with
TSB > 15 mg/dl (45%)1
1 Slusher TM et al. Pediatr Res 2003 Abst #2865
CO
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