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Part I The Field of Pediatrics >I ,,I

r.r I

prevalence and ecology of infectious agents and their hosts; (4)

I Bonita Stanton and Richard E. Behrman


climate and geography; (5) agricultural resources and practices
(nutritional resources); (6) stage of industrialization and urban-
ization; (7) the gene frequencies for some disorders; and (8) the
health and social welfare infrastructure available within these
countries. Health problems are not restricted to single nations
Pediatrics is concerned with the health of infants, children, and and are not limited by country boundaries; the interrelation of
adolescents; their growth and development; and their opportu- health issues across the globe has achieved widespread recogni-
nity to achieve full potential as adults. Pediatricians must be con- tion in the wake of the SARS (severe acute respiratory syndrome)
cerned not only with particular organ systems and biologic and AIDS epidemics, expansions in the pandemics of cholera and
processes, but also with environmental and social influences, West Nile virus, war and bioterrorism, and the tsunami of 2004.
which have a major impact on the physical, emotional, and Child health priorities must reflect local politics, resources, and
mental health and social well-being of children and their needs. The state of health of any community must be defined by
families. the incidence of illness and by data from studies that show the
Pediatricians should also serve as advocates for all children, changes that occur with time and in response to programs of pre-
irrespective of culture, religion, gender, race, or ethnicity or of vention, case finding, therapy, and surveillance. Accordingly, with
local, state, or national boundaries. Children cannot advocate for time, the relative importance of the various causes of childhood
themselves. The more politically, economically, or socially disen- morbidity and mortality may undergo major changes.
franchised a population or a nation, the greater the need for advo- Resources also vary greatly by nation, with 78 nations enjoy-
cacy for children by the profession whose entire purpose is to ing a per capita income >$9,3861yr (27 >$20,00OIyr) and
advance the well-being of children. The young are often among 61 nations struggling with per capita incomes <$7651yr
the most vulnerable or disadvantaged in society and, thus, their (20 <$3001yr). Likewise, nations expend differently; in the United
needs require special attention. As artificial divides between States, >$5,000 is spent per citizen per year in health care com-
nations blur through advanced transportation and communica- pared to $3 per person in the world's 41 poorest countries, most
tion, through globalization of the economy, and through modern of which are in sub-Saharan Africa. While there is a strong cor-
means of warfare and as the categorization of countries into relation between per capita income and child health outcomes
"developed" or "industrialized" and "developing" or "low (and between child health outcomes and expenditure for health),
income" break down due to uneven advances within and across this relationship is not absolute. Singapore enjoys the lowest
countries, a global perspective for the field of pediatrics becomes infant and child mortality rates in the world; the per capita
both a reality and a necessity. income ranks =29th worldwide.
The number of births in the United States has been increasing
since 1976 and is expected to continue to increase at 1-2% annu- HISTORY OF INFANT AND CHILD HEALTH
ally. Despite increases in the numbers of births, the proportion of
children relative to the adult population is decreasing whereas the
proportion of older adults relative to younger adults is increas- INFANT H m . In the late 19th century in the United States, 200
ing (Fig. 1-1).Currently, children younger than age 18 constitute of every 1,000 children born alive died before the age of 1 yr of
approximately 'I4 of the U.S. population. conditions such as dysentery, pneumonia, diphtheria, and whoop-
Worldwide, children represent a higher proportion of the pop- ing cough. The efforts of pediatricians, scientists, and pioneers in
ulation, with children younger than age 15 accounting for 1.8 public health have led t o a better understanding of the origin and
billion (28%) of the world's 6.4 billion persons. In 2003, there management of diseases of childhood such that, in the past half
were an estimated 133 million births worldwide, 120 million century, the infant mortality rate in the United States has
(90%) of which were in developing countries. Four million (3%) decreased from around 75/1,000 live births in 1925to 4.8/1,000
of these births were in the United States. in 2001. Although this rate had held steady or improved every
year since 1958, the 2003 rate was 6.8511,000.
Both neonatal (<I mo) and postneonatal (1-11 mo) mortality
SCOPE AND HISTORY OF PEDIATRICS have had major reductions. Most of the decline in infant mor-
AND VITAL STATISTICS tality since 1970 is attributable to a decrease in the birthweigirt-
specific infant mortality rate related to neonatal intensive care,
More than a century ago, pediatrics emerged as a medical spe- not to the prevention of low-birthweight b i (seeChapter 93).
cialty in response to increasing awareness that the health prob- The majority of deaths of infants younger than 1 yr of age occur
lems of children differ from those of adults and that a child's in the 1st 28 days of life, most of these in the 1st 7 days; more-
response to illness and stress varies with age. In 1959, the United over, a large proportion of the deaths in the 1st 7 days occur on
Nations issued the Declaration of the Rights of the Child, artic- the 1st day. An increasing number of severely ill infants born at
ulating the universal presumption that children everywhere have very low birthweight survive the neonatal period, however, and
fundamental needs and rights. Virtually all nations have practic- die later in infancy of neonatal disease, its sequelae, or its com-
ing pediatricians and most medical schools across the globe have plications (Tables 1-1, 1-2, and 1-3).
departments of pediatrics or child health. The preponderance of under-5 mortality (children dying before
The health problems of children and youth vary widely the age of 5 yr) occurring in the 1st year of life is also applicable
between and within populations in the nations of the world to industrialized countries overall, with an infant mortality of
depending on a number of often interrelated factors. These 511,000 representing >80% of the under-5 mortality rate of
factors include (1)economic considerations (economic dispari- 611,000 in 2004. In the least developed countries, the infant mor-
ties); (2) educational, social, and cultural considerations; (3) the tality rate of 9811,000 accounts for 63% of the under-5 mortal-
2 PART I The F i e l d of Pediatrics

Percent of population in 4 age groups: United States, 1950,2000, and 2050

Fleuri 1 1 Percent of populat~onIn 4 age groups: Un~ted


States, 1950, 2 0 0 0 , and 2 0 5 0 . (From Centers for D~sease
65-74 Control and Prevent~on,Nat~onalCenter for Health Stat~s-
65-74 tlcs: Health, Untted States, 2004. DHSS Publication No.
yr 2004-1232.)
75 + 75 +

1 -
Whlte Black White Black White Black White Black White BI,
MALE
<1 yr 2,694 5,307 2,113 4,299 1,230 2,587 896 2,112
1-4 yr 105 209 84 151 66 111 46 86
5-14 yr I 53 75 48 67 35 47 26 41
15-24 yr ''
I '1 '144 212 171 321 167 209 131 252
FEMALE
<1 yr 2,008 4,162 1,615 3,369 963 2,124 690 1,736
1-4 yr 85 - I 173 66 129 49 84 36 68
-

,
5-14 yr 35 1 54 30 44 23 31 18 28
15-24 yr 55 108 62 112 56 71 46 69
Death rates per 100,000 populat~on. I
+Adapted horn Srarrrr~ralAbsrrartafUnrredSrater 1993, 113th edlanharn. M 4 Berrnan Press, 1993,table 119,
Hoyert DL,Arlas E Smith BL,et a1 Deaths Final data for 1999.Nar/V1IalStatRep 2001,49 1-113.Nat1onal (enter for Health Stat~st~cs
Heallh. UniredStaa2W5, DHSS Publicat~onNa2005-1232, table 35,
-

ity rate of 15511,000, indicating a somewhat greater proportion tality rate was 511,000, whereas among nations categorized as
of deaths occurring among children after infancy in these very developing, it was 5911,000, with the poorest rate in sub-Saharan
high risk countries (Table 1-4). Worldwide, 3.9 million of the Africa (10211,000 live births). The U.S. rate in 2004 of 711,000
10.8 million deaths of children younger than 5 yr occur in the compared unfavorably to that of 40 other nations (including
1st 28 days of life. In populations with the highest child mortal- developing countries such as Cuba with a rate of 611,000);
ity rates, however, just over 20% of all child deaths occurred in Finland with a rate of 211,000, had the lowest infant mortality
the neonatal period, but in countries with mortality rates in the world.
<3511,000 livebirths, >SO% of child deaths were in neonates (Fig. Causes of death vary by developmental status of the nation. In
1-2). Across the globe, there are significant variations in infant the United States, the 3 leading causes of death among infants
mortality rates by nation, by region, by economic status, and by were congenital anomalies, disorders related to gestation and low
level of industrial development, the categorizations employed by birthweight, and sudden infant death (Table 1-5). By contrast, in
the World Bank and the United Nations (see Table 1-4). Among developing countries, the majority of infant deaths result from
the nations categorized as industrialized, in 2004, the infant mor- infectious diseases; even in the neonatal period, 24% of deaths

UNUtH 1 YR 1-4 YR 5-14 YR 15-24 YR C


mE
Bm
HS INFANT NEONATAL POS~ATAL
DEATHS PER 100.000 RESIDENT POPULATION laces 4,021,726 7.0 4.7 23
All persons . 1- 695.0 31.2 17.4 81.4 te 3,174,760 5.8 3.9 1.9
Male 761.5 35.2 20.0 117.3 k or African-American 593,691 13.8 93 45
Female II 625.3 27.0 14.7 43.7 !rican Indian or Alaska Native 42,368 8.6 4.6 4.0
n o r Pacific Islander 210,907 4.8 3.4 1.4
MALES
hlnese 33,673 3.0 2.4 0.7
Whlte 650.9 31.5 18.4 109.7 3panese 9,264 4.9 3.7
Black male (African-American) 1,351.5 54.4 28.9 172.6 liplno 33,016 5.7 4.1 17
American Indian or Alaska Natlve 896.8 48.3 22.0 145.1 awallan 6,772 9.6 5.6 40
Aslan or Pacific Islander 461.9 27.1 14.4 58.6 rher Aslan or Pachc Islander 128,182 4.7 3.3 14
Hlspanic or Latino 644.0 34.2 17.4 114.4 anic o r Latino 876,642 5.6 3.8 18
White not Hispan~cor Latino 643.5 30.3 18.3 106.7 lexlcan 627,505 5.4 3.6 18
FEMALES uerto Ritan 57,465 82 5.8 2-4
White 519.4 24.5 13.7 42.4 -uban 14,232 3.7 3.2
Black (Afritan-Amer~can) 1,172.0 39.5 19.9 54.4 rentral and South Arner~can 125,981 5.1 35 1.6
American Indian or Alaska Native 744.1 42.0 21.2 61.7 Ither and unknown Hlspanc or Latlno 51,459 73 5.1 2.0
Asian or Pacific Islander 391.4 19.6 10.4 23.8 Hispanic o r Latino
Hirpan~cor Latino 539.1 25.1 13.5 34.1 Nhte 2,298,156 5.8 3.9 1.9
iite not Hlspanic or Larina 504.8 23. 3.6 43.8 3lack or Afrcan Arner~can 578.335 13.9 93 46
Chapter 1 . Ovewiew of Pediatrics . 3

MORTALITY RATE BY YR PER 1,000 LIVEBIRTHS Per CAPITA


UNDER-5 INFANT
1960 2004 1960 - 2004
)-Saharan Africa
jdle EastlNorth Africa
~ t Asia
h
278
249
244
171
56
92
185
157
148
:[,\) 102
44
67
,t AsialPacific 208 36 1371; c29

' 1
'7.'
in AmericaICaribbean 153 31 I
102 1
!I05 112 38 8 3 n --I
lustr~alizedcountries
veloping countries
39
224
6
87
q

"
32 1
1421 -. ' :15;
32,232
1,524
. IL
1st developed countries . 278 155 171.' I " 98 345 2

are caused by severe infections and 7 % by tetanus. In develop-


ing countries, 2 9 % of neonatal deaths are due to birth asphyxia
and 2 4 % due to complications of prematurity. CAUSE OF DEATH DEATH
AGE AND RANKORDER
In the majority of countries, the most robust predictor of infant
Under l yr 11 I All causes 28,034
mortality is a poor level of maternal education. Other maternal
., ., Congenital malformation,deiormationr,andchromosomal 5,623
risk characteristics, such as unmarried status, adolescence, and
I abnormalities
high parity, correlate with increased risk of postneonatal mortal- I1 ,
;. ,Disorders related to short gestation and low birthweight, 4,637
ity and morbidity and low birthweight.
-- 1.:
I1
,
not elsewhere classified
ISudden infant death syndrome 2,295
HEALTH AMONG POSTINFANCY CHILDREN. A profound improve- '1 Newborn affected by maternal compl~cationsof pregnancy 1,708
ment in child health occurred in the 20th century with the intro-
- - iNewborn affected by complications of placenta, cord,and 1,028
' I membranes
duction of antibacterial disinfectants. antibiotic aeents.
" , and
vaccines. Early in the 20th century in industrialized nations, I .. .. . .Unintent~onal injuries 946
Respiratory distress of newborn 943
efforts to control infectious diseases were complemented by better
understanding of nutrition. In the United States, Canada, and
parts of Europe, new and continuing discoveries in these areas
led to establishment of public well child clinics for low-income
~ . .. . .JBacterlal sepsis of newborn
Diseases of circulatory system
1 I Intrauterine hypoxia and b ~ r t hasphyxia
All causes
749
667
583
4,858
families. Although the timing of control of infectious disease was Unintentional injuries 1,641
530

'
uneven around the globe, this focus on control was accompanied Congenital malformations,deformations,and
by significant decreases in morbidity and mortality in all coun- : 1' chromosomal abnormalities
• I r. Homicide
tries. The smallpox eradication program of the 1970s resulted in
% !. I Mahgnant neoplasms
the global eradication of smallpox in 1977. The introduction in
the 1970s of the Expanded Program of Immunizations (univer-
. ' Diseases of heart
'Influenza and pneumonia
sal vaccination against polio, diphtheria, measles, tuberculosis, I I :kPticem~a
tetanus, and pertussis) by the World Health Organization ( W H O )
and United Nations' Children's Fund (UNICEF) has resulted in
an estimated annual reduction of 2 million deaths per year glob-
%I
. -
' I ,
- Chronic lower resoiratorv, , diseases
certain conditions originating in the perinatal period
,In situ neoplasms, benign neoplasms,and neoplasms of
ally. Recognizing the importance of prevention of infectious dis-
eases to the health of children, several countries ranked by the
' 1) uncertain or unknown behavior
All causes
Unintentional injuries
Malignant neoplasms
Congenital malformations, deformations,and
chromosomal abnormalities
Hom~cide
Suicide
Diseases of the heart
Chronic lower respiratory diseases
I Septicemia
4
Cerebrovascular diseases
"IJ lnfluenza and pneumonia
1 15-24 yr All causes
I Unintent~onalinjuries
Hom~cide
Suicide
Malignant neoplasms
Diseases of the heart
0J Congenital malformations, deformations, and chromosomal
I I 1 I I I
0 50 100 150 200 250 300 abnormalities
Chronic lower respiratory diseases
Under-5-year mortality rate (per 1,000) per survey
HIV disease
1: ; ~ L I ~1-1.
L Relationship between under-5 year mortality rate and percentage Diabetes mellitus
of deaths in neonatal period. (From Black E, Morris S, Bryce J: Where and Cerebrovascular diseases
why are 10 million children dying every year? Lancet 2003;361:2226-2234.) Adapted from National (enter for Health Statlit~cr.Healrh, United irate8 2004, OH55 Pubitation No 2004-1232, table 3
4 rn PART I rn The Field of Pediatrics

World Bank as among the 61 poorest nations (per capita income global HIV victims by the year 2005), antiretroviral drugs were
<$766lyr) have invested heavily in infectious disease control essentially unavailable to most developing countries, including all
through the development of internal vaccine production capabil- of those hardest hit by the HIV epidemic. Increasing rates of
ity. Vietnam (per capita income $480lyr), the world's 3rd nation tuberculosis and continued problems with pandemics such as
to produce polio vaccine, is now self-sufficient for vaccine pro- cholera further challenge many of these nations. Strains of drug-
duction of 2 of the vaccines used in its vaccination program. As resistant malaria are also a major concern in isolated areas
diarrheal diseases continued through the mid-1970s to account around the world, but 90% of rnalarial deaths (the majority
for ~ 2 5 %of infant and childhood deaths in the nonindustrial- among children) are occurring in sub-Saharan Africa. Diseases
ized countries (4.6 million deaths per year), attention turned to once confined to limited geographic niches, including West Nile
the development and utilization of oral resuscitation fluids to virus, and diseases previously uncommon among humans, such
sustain children through potentially life-threatening episodes of as SARS and the avian flu virus, increased awareness of the inter-
acute diarrheal diseases. Oral rehydration solutions are largely connectedness of health around the world. Formerly perceived as
credited with the current reduction of diarrheal deaths annually a problem of industrialized nations, motor vehicle crashes are
to 1.5 million. This simple medical treatment serves as an impor- now a major cause of mortality in developing countries as well.
tant example of "reverse technology" in which a major medical Enormous disparities exist in childhood mortality rates across
innovation was initially utilized in developing nations and sub- the globe (see Table 1-4). Among the 10.8 million childhood
sequently introduced in the industrialized world (see Chapter 55). deaths occurring worldwide each year, ~ 4 1 %occur in sub-
In the later 20th century, with improved control of infectious Saharan Africa, home to 4 0 % of the world's population. Fifty
diseases (including the elimination of polio in the Western hemi- percent of the world's childhood deaths are occurring in 6
sphere) through both prevention and treatment, pediatric medi- nations; 90% of childhood deaths atre occurring in only 42 of the
cine in industrialized nations increasingly turned its attention to world's 192 nations. In 2004, the United States had an under-5
a broad spectrum of conditions. These included both potentially mortality rate of 811,000 livebirths. Thirty-five nations had
lethal conditions and temporarily or permanently handicapping under-5 mortality rates lower than that of the United States, with
conditions; among these disorders were leukemia, cystic fibrosis, Singapore having the lowest rate at 311,000. The comparable
diseases of the newborn infant, congenital heart disease, mental child mortality rate in sub-Saharan Africa was 17111,000 live-
retardation, genetic defects, rheumatic diseases, renal diseases, births. Sierra Leone has the highest under-5 mortality rate at
and metabolic and endocrine disorders. Thus, in industrialized 28311,000 livebirths, followed by Pingola at 260, Afghanistan at
nations, the last 2 decades of the 20th century were marked by 257, Liberia at 235, Somalia at 225, and Mali at 219. In 1990,
accelerated understanding of new approaches to the management Sierra Leone and Niger had rates in excess of 30011,000 lives
of many disorders as a consequence of advances in molecular births; their current rates do represent progress. Of the 51 nations
biology, genetics, and immunology. with under-5 mortality rates in excess of 200 in the year 1990,
Increasing attention has also been given to behavioral and in 2003, 18 showed no improvement or a worsening, and 3
social aspects of child health, ranging from re-examination of nations whose under-5 morality rate had been at <100/1,000 live-
child-rearing practices to creation of major programs aimed at births in 1990 were in excess of 100.
prevention and management of abuse and neglect of infants and Causes of under-5 mortality differ markedly between devel-
children. Developmental psychologists, child psychiatrists, neu- oped and developing nations. In developing countries, 66% of all
roscientists, sociologists, anthropologists, ethnologists, and deaths resulted from infectious and parasitic diseases. Among the
others have brought us new insights into human potential, includ- 42 countries having 90% of childhood deaths, diarrheal disease
ing new views of the importance of the environmental circum- accounted for 22% of deaths, pneumonia 21%, malaria 9%,
sr3ricc.1 J11r11ifip r r g n ~ n c y ,\ u r r ~ ~ u l ~ c fijlrrh.
~ l ~ g .ind In rhc c,irly AIDS 3 %, and measles 1%. Neonatal causes contributed to 33%.
?car\ ot chrld rcdrrry. T h r I.~tcr20th icntury \v~rnrssedrhc h r g ~ n - The contribution for AIDS varies greatly by country, being
nllig o i nr'lrly i ~ n ~ v e r saci.cpt.1nc.c
'~l 1y prd~,irrrcproirsslonal soil- responsible for a substantial propo~rtionof deaths in some coun-
crIc5 c)f JttcntlotI to 11orni;ll dcvcl~~plneilr,ch~ld-rr.~ring,cind tries and negligible amounts in others. Likewise, there is sub-
p ~ ~ ' l i o ~ o c . di .~l ls o r d r r sacross the contlncnts. 111 t h r last dccndr, stantial co-occurrence of infection!;; a child may die with HIV,
irrespective of level of industrialization, nations have developed malaria, measles, and pneumonia. Infectious diseases are still
programs addressing not only causes of mortality and physical responsible for much of the mortality in developing countries. In
morbidity (such as infectious diseases and protein-calorie malnu- the United States, pneumonia (and influenza) accounted for only
trition), but also factors leading to decreased cognition and 2% of under-5 deaths, with only negligible contributions from
thwarted psychosocial development, including- punitive
.
child- diarrhea and malaria. Unintentional injury is the most common
rearing practices, ihild I,lhcrr, u n d r r n ~ ~ r r ~ r i oLvar. n . ,inrl poor cause of death among U.S. childre~nages 1-5 yr, accounting for
\c.hooling. Oheurv 1s rccugrlized .is .I rn.~iorhc.ilrll risk. I'rogrehc about 33% of deaths, followed by congenital anomalies (11%),
LII thr. turn trl: [he I l \ r icntilr\ tti u n r a v r l ~ n grhc human grrlornr malignant neoplasms (8%), and homicides (7%). Other causes
o i i r r b tor rhc 1st rlmth the rcaliz,it~orl t h ~ t~ i ~ n ~ t i c agelirrii
nt accounted for 4 % of total mortality within this age group (see
icrccnlrig, indlv~duallzudph.irrnacothct~lp~, and grnerlc rnanlptl- Table 1-5). Although unintentional injuries in developing coun-
Iarivl~will I3r a part o f routine pcdi:lrric trritttnrnr and preven- tries are proportionately less important causes of mortality than
tion practices in the future. The prevention implications of the in developed countries, their absolute rates and their contribu-
grnomc proleit ~ i v crisc ro the possil2ili~-of reducing costs tor tions to morbidity are substantially greater.
rhc care ot illness hut increase pr1v.lc.y issues (>reChdptrr ; I .
h l t h u ~ ~ g l local
i t;~niinrs ancl d i s ~ s t e r . ~,ind
. rttglonal and MORBIDITIES AMONG CHILDREN. It is important to examine mor-
nario~ialwdi-5 have pcr101I1~i111~ d ~ s r ~ p tthe ~ ' Jg c n r r ~ lrrrnd tor bidities as well as mortality. Adequately addressing special health
global Improvement ill child health 1ndic.e~.I r w a s 11or u n t ~ lthr care needs is important in all coun1:ries both to minimize loss of
advent of the AIDS epidemic in the later 20th century that the life and to maximize the potential of each individual.
1st substantial global erosion of progress in child health outcomes In the United States, ~ 7 0 %of all pediatric hospital bed days
occurred. This erosion has resulted in ever-widening gaps are for chronic illnesses; 80% of pediatric health expenditures are
between childhood health indices in sub-Saharan Africa com- for 20% of children. In 2004, an estimated 12.8% of children
pared to the rest of the world. From 1990 to 2002, life expectancy younger than age 18 yr in the United States (about 9.4 million
in sub-Saharan Africa decreased from 50 yr to 46 yr; 1 3 nations children) have special health care needs. One fifth of U.S. house-
have experienced declining life expectancies. Until the WHO'S holds with children have 1 or more children with special health
global "3 by 5" campaign (three retroviral agents for 20% of care needs (see Chapter 38). Significantly more poor children and
Chapter 1 rn Ovewiew of Pediatrics rn 5

minority children have special health care needs. Although there based. Approximately 90% of the deaths resulting from these
are multiple chronic conditions and the prevalence of these dis- conflicts have been among civilians, 80% among women and chil-
orders vary by population, 2 of these morbidities-obesity and dren. Sixteen of the world's poorest 20 countries have endured a
asthma-have a substantial and increasing presence worldwide civil war in the past 15 yr (see Chapter 35).
and are associated with substantial health consequences and
costs.
In the United States, =25% of children and adolescents are SPECIAL RISK POPULATIONS
overweight, representing a 2.3- to 3.3-fold increase over the past
25 yr. Similar profiles have been reported from Australia and mul- In addition to the enormous differences in infant and child health
tiple countries in Europe (see also Chapter 44). Also increasing between regions and nations, within countries there are substan-
in prevalence among industrialized nations and in middle- and tial variations in morbidity and mortality rates by socioeconomic
low-income nations with substantial urbanization are rates of class and ethnicity. Most children at special risk need a nurtur-
asthma. In the mid-1990s, the United States reported an annual ing environment but have had their futures compromised by
prevalence rate of wheezing of 57.8/1,000 among children ages actions or policies arising from their families, schools, communi-
0 to 4 yr and 74.4/1,000 among youth ages 5 to 15 yr, approxi- ties, nations, or the international community. These problems
mately twofold higher than comparable prevalence rates in 1980. have several causes, whether the end result is homeless children,
The International Study of Asthma and Allergies has conducted runaway children, children in foster care, or children in other dis-
a systematic review of asthma prevalence, with compelling evi- advantaged groups. The most effective preventive approach
dence for a substantial global burden of childhood asthma, involves alleviation of poverty, inadequate parenting, discrimina-
although rates vary substantially between and within countries. tion, violence, poor housing, and poor education. Optimal care
The highest annual prevalence rates are in the United Kingdom, of these children requires reducing barriers to health care with
Australia, New Zealand, and Ireland, with the lowest rates in organized programs, multidiscipline teams, and special financing.
Eastern European countries, Indonesia, China, Taiwan, India,
and Ethiopia. Although there was a tendency for poorer coun- CHILDREN I N POVERTY. Family income is central to the health and
tries to have lower asthma rates, this relationship was not well-being of children. Children living in poor families, especially
absolute (see Chapter 143). those located in poor communities, are much more likely than
Chronic cognitive morbidities represent another substantial children living in upper- or middle-class families to experience
problem. Although different diagnostic criteria have been material deprivation and poor health, die during childhood, score
applied, attention-deficitlhyperactivity disorder (ADHD) is iden- lower on standardized tests, be retained in a grade or drop out
tified in > l o % of children in many countries, including the United of school, have out-of-wedlock births, experience violent crime,
States, New Zealand, Australia, Spain, Italy, Colombia, and cnJ 1117a\ poor adults. and suffer orhcr undesirable outcomes. In
Great Britain. Variations in cultural tolerance andlor differences 200;. 17'?i7of (1.5. children livril in povcrt). (defined AS incolnc
in screening approaches or tools may account for some of the dif- <5 1 X.4OO/yr ['or a fam~lyof four), a rare among tllr highcsr of
ferences in prevalence of the disorder by country, but genetic and dcvcloped iountrlcs. Seven percent lived in extreme povcr:. The
gene-environmental interactions may also play a role. Despite povrrty rates drc higher for children than adults and arc Iiighcst
variations in rate, the condition is universal. Beyond the personal tor ~r~tants and toddlers. Children who are poor have higher than
and familial stress caused by the disorder, costs to the educational Jvcrdge rates oi death and illness from almosr all cairscs (excrp-
system are considerable. In the United States in 1995, an esti- trc>ns be~ngs u ~ c ~ dJ cI I ~motor vehicle crashes, which are most
mated $3 billion additional dollars were expended by public conlnlon among wh~te,non-pocn children). Many fnctr~rsassoci-
school systems on children with ADHD. In developing countries . ~ r r ~b vl ~ t hpoverty are responsihlc for these ill~icsscs;crt)wding.
without resources for special education, these children are poor hyg~rncand health care, poor dirt, environmcnr31 polli~tion.
unlikely to fulfill their academic potential (see Chapter 31). poor education, and srress.
Mental retardation affects =I-3% of children in the United ' ; ~ r n ~ lpov~.rry-linked
~r d~spaririesrndy exist in countrirs with
States, with 75% of these children having mild retardation. Rates \,er! hlph inf-lnt rliortality rates (sub-Saharan Atrica). In rhc low-
are severalfold higher among very low birthweight infants, affect- Irlic:,mc develop~ngcnirntries. the rare o l infant mortality among
ing between 20 and 40% of such children born in the mid-1990s. the poorect quintilz of the populat~on1s lnnrr rhan twice that of
In the United States, there is substantial variation in rates of mild rhz ~realthicstq~i~nrilc- (Fig. 1-3).
retardation by socioeconomic status (ninefold higher in the I'nvcrry and economic loss diminish the capaciry of parents to
lowest compared to the highest socioeconomic stratum) but rel- Ire 511pport1ve.c1)11sistcnt.ancl involved with thrir ch~ldren.Clin-
atively equivalent rates of severe retardation. A similar income- Icl;lnv need to bc cspccially alrrr to the development and behav-
related distribution is found in other countries, including some lor ot children \vhose pdrrllts havc lost thrir jobs or who live in
of the most impoverished countries such as Bangladesh. Lower pcr~n.~nrnt poverty. Farhers who bccomr unernploycd frequently
overall rates have been reported in some countries, including develop psyc1i~)sornaticsymptoms, and rheir children often
countries ranging from Saudi Arabia to Sweden to China; the dif- di.velop similar symptoms. Young childrrn who grcw up in the
ference is primarily in the prevalence of mild retardation (see Grear Depression in the Urlitcd States and whose parents were
Chapter 38). .;l~l>jrct to asirtr povrrry suffered more that1 older children, espe-
The prevalence of post-traumatic stress disorder (PTSD) varies i l ~ l l ! ~ithe older ones able rc) rake on rcsponsihil~tiesfor
considerably around the globe, but in children with substantial help~ngrhc t,lrnily rcoriornically. Such responsibilities during ado-
exposure to violence, the rates may be very high. After the attacks Irscr~lccsccm to give purposr and direcric~nto an adolescent's
on the World Trade Center towers and the Pentagon in 2001, litc. 'l'hc younger children. faced with parental depression and
33% of U.S. children had experienced one or more symptoms of ~rn.tblrto do ~nyrhingto help, suffered a higher frequency of
PTSD. One half of Palestinian children experience at least 1 sig- ~llrlessand a diminished capacity to lead productive lives cven as
nificant lifetime trauma and >33% (66% of those experiencing adults.
trauma) meet the criteria of PTSD. Natural disasters such as the Pediatricians and other child health workers have a responsi-
tsunami of 2004; war, including those in Afghanistan, Sudan, and bility both to mitigate the effects of poverty on their patients and
Iraq; and urban violence all leave their indelible marks on the to contribute to efforts to reduce the number of children living
minds of children. From 1990 to 2003, there were 59 major in poverty. Clinicians should ask parents about their economic
armed conflicts worldwide, only 4 of which were wars between resources, adverse changes in their financial situation, and the
nations; the majority of these internal conflicts are ethnically family's attempts to cope. Encouraging concrete methods of
6 PART I The Field of Pediatrics

Poorest 2nd poorest d:e


;:i 2nd richest Richest below the 200% poverty level. Contributing to the lack of access
fifth fifth fifth fifth to higher salaried jobs is the lack of proficiency in English (=66%
of immigrants) and the lack of edlucation (40% have not com-
pleted high school). Immigrant fathers are as likely as U.S.-born
fathers to work full-time (80%) but are 33-50% less likely to
receive social welfare benefits. This gap exists for cultural reasons
(many immigrants feeling it inappropriate to accept social
support or fearing contact with governmental authorities), logis-
tical complications (especially problematic given limited language
skills), and reduced eligibility since the Welfare Reform Act of

Dl
1996. In the past decade, about 53 million immigrants attained
permanent residency status. There may be 850,000-1,000,000
illegal immigrant children.
Families of different origins obviously bring different health
problems and different cultural backgrounds, which influence
health practices and use of medical care. To provide appropriate
services, clinicians need to understand these influences (see
Kenya Chapter 4). For example, the high prevalence of hepatitis among
women from Southeast Asia makes use of hepatitis B vaccine
Country essential for their newborns. Children from Southeast Asia and
Under-5 rnortal~tyrates by socioeconomic quintile of the house- South America have growth patterns that are generally below the
hold in selected countries. (From Victora CG, Wagstaff A, Schellenberg JA, et norms established for children of Western European origin, as
al: Applying an equity lens to child health and mortality: More of the same is well as high rates of hepatitis, parasitic diseases, and nutritional
not enough. Lancet 2003;362:233-241 ) deficiencies and high degrees of psychosocial stress. Foreign-born
children may surpass American-born children in many health out-
comes, but their health deteriorates as they become acculturated
(see Chapter 4).
coping, suggesting ways to reduce stressful social circumstances Refugee children who escape frotn war or political violence and
while increasing social networks that are supportive, and refer- whose families have been subjectecl to extreme stress represent a
ring patients and their families to appropriate welfare, job train- subset of immigrant children who have faced severe trauma.
ing, and family agencies can significantly improve the health and These children have a particularly high incidence of mental and
functioning of children at risk when their families live in poverty. behavioral problems (see Chapter 24).
In many cases, special services, especially social services, need to "Linguistically isolated households," in which no one older
be added to the traditional medical services; outreach is required than 14 yr of age speaks English, often present significant obsta-
to find and encourage parents to use health services and bring cles to providing quality health care to children because of diffi-
their children into the health care system. Pediatricians also have culties in understanding and comniunicating basic concerns and
the responsibility to contribute to and advocate for safety net ser- instructions, avoiding compromising privacy and confidentiality
vices for impoverished children within and outside the bound- interests, and obtaining informed consent (see Chapter 4).
aries of their own country. An increasing number of programs The United States is home to multiple minority populations,
are available to help children of greatest need worldwide, such including the 2 largest groups, Latinos and African Americans.
as Project Smile, CARE, Project Hope, and Doctors Without The nonwhite minority groups will constitute >50% of the U.S.
Borders. population by 2050 (see Chapter 4). Nonwhite children in the
United States disproportionately experience adverse child health
CHILDREN OF IMMIGRANTS A N D RACIAL MINORITY GROUPS outcomes (see Tables 1-1, 1-2, and 1-3). Infants born to African-
INCLUDlNG U.S. NATIVE AMERICANS. Eleven percent of the U.S. American mothers experience low-birthweight and infant mor-
population is foreign-born; 1 of every 5 children lives in an immi- tality rates twice those with white mothers (see Chapter 93).
grant family. The United States is experiencing a wave of immi- Rates of these 2 adverse health outcomes are also substantially
gration larger than that occurring in the early 20th century. There higher among Hispanic infants and children, although there is
has been an increase in immigration from China, India, South- great variation by country of origin. The rates are particularly
east Asia. Mexico. the Dominican Re~ublic. and the former high among those of Puerto Rican descent (=1.5 times the rates
So\:~ctL:I~I(>II n;itIon>. 1~1it11 tlic ni1d-20rh C ~ I I C U S cnilgr.~rlt~
~, ro for white infants). In 2002, the infant mortality rate for white
the linitcd 5t.itt~wcrc prlr~lar~ly . ~ 1 i h infants was 5.8/1,000, whereas that for African-America infants
\ v h ~ r cJ I I ~tronl E ~ r o p t ' 5
t ~ ~ d i v ~ dilon
\ ~ ~~~- ~l ip r c s cq ~m il !t i ~ h o u t 10''o t ) t lri~n\igr.\rlt!,: thc was 12.5; for Native Americans, 8.1; and for Hispanics, 5.9
rcrn:l~nclrr.lrc r)vcr\\ hrlmrn,~l!.ot c<rlos.lnJ t r o m t h r o \ r L h o u r rhr (Table 1-6). Latino, Native American, and African-American chil-
ivclrl~l.11lrIi1)ugll~rrimigrant< in rhr Crn~teclhrare, h,~\.cf , ~ i ~dl\- d dren are substantially more likely to live in poverty than are white
crimination and oppression throughout history, the potential for children.
such discrimination is compounded by the racial differences rep- There are =2.5 million Native Americans (4.1 in combination
resented in the current immigrant pool. In the United States, with other racestethnicities) and 558 federally recognized tribes.
about 240,000 children legally immigrate each year, and an esti- With 840,000 children (1.4 milliori in combination), the Native
mated 50,000lyr enter the country illegally. Immigrants now American population has a much higher proportion of children
comprise >15% of the population in >50 countries, including (34%) than does the remainder of the U.S. population (26%).
many Western European countries. About 60% of Native Americans live in urban areas, not on or
The immigrant population constitutes a substantial proportion near native lands. Like their minority immigrant counterparts,
of the low-wage labor market. Immigrants represent 14% of all thev have faced social and economic discrimination. The unem-
U.S. workers but 20% of low-wage workers. Immigrants are ployment and poverty levels of Kative Americans are, respec-
twice as likely as U.S.-born citizens to earn less than minimum tively, threefold and fourfold that of the white population, and
wage. The poverty rate of children in immigrant families is 50% far fewer Native Americans graduate from high school or go to
greater than in U.S.-born families, with 50% of immigrant chil- college. The rate of low birthweight among Native Americans is
dren compared to 33% of children in US.-born families being more than the white rate but less than the black rate. The neona-
. .
--
Chapter 1 Overview of Pediatrics 7

-
MZW. Incidencept Cow BirthweightadInfant Momhy Anmng tion is primarily from Florida, whereas the western migration
elected Grrreps 6flllath*-somvs Mgn-Bom Mothers comes from Texas, other border states, and Mexico. Many chil-
m dren travel with their parents and experience poor housing, fre-
LOW BIRTHWEIGHT(PEREWT) I
(RAM PER 1,000 BIRTHS)
quent moves, and a socioeconomic system controlled by a crew
hoss who arranges the jobs, provides transportation, and often,
Native-Born Foreign-Born Natiw-Born Foreign-Born together with the farm owners, provides food, alcohol, and drugs
migrant Group Mother Mother Mother Mother
under a "company store" system that leaves migrant families with
1
Vhite 4.5 3.9 5.8 4.6 little money or in debt. Children often go without schooling;
,frican American 118 8.O 12.9 10.5 medical care is usually limited.
riexlcan 5.4 4.1 6.6 5.3 I
uerto R ~ t a n 7.9 7.5 7.8 7.0
The medical problems of children of migrant farmworkers are
uban 47. 4.4 53 4.7
similar to those of children of homeless families: increased fre-
entrailSouth Arner~can 5.2 4.8 5.2 5 O. quency of infections (including HIV), trauma, poor nutrition,

I
hinese 4.8 3.8 4.6 4.3 poor dental care, low immunization rates, exposures to animals
I illpino 6.9 6.1 6.8 and toxic chemicals, anemia, and developmental delays.
panese 5.0 5.0 3.7 Among the most substantial migrant populations in the world
: ther Asian 5.3 5.7 6.2 is China's "floating population," an estimated 100 million
om LandaleNS.Oro~esaRS,GormanBK lmmlarantsand ~nfanthealth:B~rthoutcomes
The
InHernandezDJ iedi Ih~idrenofirnrni~ron~~~eaith,~d~u~tmenr,and~ubi;t~ss;sron~e.~ai~~n~ton,~~,~at~onalAtadem~
.
(almost 10% of China's ~ o ~ u l a t i o of
L
n ) rural to urban migrants.
growing urban versus iural income gadienCand a
relaxation of restrictions on movement in the country has fueled
this influx of rural residents who arrive in China's urban areas
without health, education, or employment benefits for themselves
or their children. Similar patterns are seen in many countries in
tal and the postneonatal mortality rates are higher for Native Asia, Africa, and South America. In most of these countries there
Americans living in urban areas than for urban white Americans. are few legal or social programs to aid the families or their
Deaths in the 1st yr of life due t~ sudden infant death syndrome, &en, spawning massive squatter settlements without provisions
pneumonia, and influenza are higher than the average in the for water, sanitation, education, or basic health needs. Govern-
United States, whereas deaths due to congenital anomalies, res- ment policies vary but frequently their response to
pi rat or^ distress syndrome, and disorders relating to short gesta- such communities is to bulldoze the settlements and imprison or
tion and low birthweight are similar. deport the residents.
Unintended injury deaths among Native Americans occur at
twice the rate for other U.S. populations; deaths due to malig- HOMELESS CHILDREN. Families with &Idren are the fastest
nant neoplasms are lower. During adolescence and young adult- !growing segment of the homeless population in the United States.
hood, suicide and homicide are the 2nd and 3rd causes of death Children make up about 25% of the homeless population, with
in this population and occur at about twice the rates of the rest a n estimated 100,000 children living in shelters on a given night
of the population. There may be significant underreporting of and about 500,000 homeless each year. Many homeless are not
deaths of Native American children. in shelters (living in the street or with extended families), and thus
As many as 75% of Native American children have recurrent these figures are low estimates. The population of homeless chil-
otitis media and high rates of hearing loss, resulting in learning dren has been increasing as a consequence of more families with
~roblems.Tuberculosis and gastroenteritis, formerly much more children living in poverty or near poverty, fewer available afford-
~ ~ m m oamong n Native Americans, now occur at about the able dwellings for these families, decreasing public assistance pro-
national average. Psychosocial problems are more prevalent in grams for the non-elderly poor, and the rising prevalence of
these populations than in the general population: depression, substance abuse.
alcoholism, drug abuse, out-of-wedlock teenage pregnancy, Homeless children have an increased frequency of illness,
school failure and dropout, and child abuse and neglect. including intestinal infections, anemia, neurologic disorders,
Most other nations have indigenous populations who are sub- seizures, behavioral disorders, mental illness, and dental prob-
jected to discrimination, social and economic sanctions, and/or lems, as well as increased frequency of trauma and substance
~ h ~ s i c maltreatment
al and who demonstrate the poorest child abuse. Homeless children are admitted to U.S. hospitals at a much
health outcomes. An estimated 300 million indigenous persons higher rate than the national average. They have higher school
live in 70 countries (50% in Asia) and speak ~ 4 , 0 0 0languages failure rates, and the likelihood of their being victims of abuse
Such children endure lower vaccination rates, lower school entry and neglect is higher. In one study, 50% of such children
and higher dropout rates, higher rates of poverty, and lower were found to have psychosocial problems, such as developmen-
access t~ justice. Indigenous children in Latin America account ,.,I ilcla!-y, ,r,.crr drprt;L;slon, learnirla Jisr,rdrr.i. increased
for 66% of the deaths of children younger than age 2 yr. c ~ c t psychost~cialpmblcln.;. c~peciallydeprcs-
i r ~ i ~ u u ~m.itrrr~,ll
In the United States, existing programs for meeting child health 11, homc-less hou.;eholds I ~ n sJ slgl~ifiinnruntoward lnlpact
problems are not available to all families in need, with gaps ,,,I rhr. merlt.lI . I I I ~phy.;ical health r h c ~ cchil Jren. Because ia~rl-
between eligibility for public support and parents' ability to pay 11lc. rrnil ro break . I ~ R I T r h ~strain of pr,vc.rt! and hornc-
for services. Needed services for immigrants are often either lessness, many homeless children end up in foster care. If their
nonexistent or fragmented among programs, agencies, or poli- families remain intact, frequent moves make it very difficult for
cies. Programs are often poorly coordinated, and the data col- them to receive continuity of medical care.
lection is inadequate. Homelessness exists worldwide. There are an estimated 3
million people in the 15 countries of the European Union who
CHILDREN OF MIGRANT WORKERS. Families facing economic, do not have a permanent home. In Toronto, Canada, 6,500
social, or political hardship have been forced to leave their land ~ e o p l estayed in emergency shelters on a typical night in late
and homes in search of better opportunities; such migrations 1997, a 66% increase over the previous year. In some nations in
are often within a country or between neighboring countries. Lat~nAmerica, Asia, and Africa, the distinction between rural-
Both industrialized and developing countries experience these to-urban migrants and homelessness is blurred.
migrations. Provision of adequate housing, job retraining for the parents,
In the United States, there are an estimated 3-5 million migrant and mental health and social services are necessary to prevent
and seasonal farmworkers and their families. The eastern migra- homelessness from occurring. Physicians can have an important
8 PART I The Field of Pediatrics

role in motivating society to adopt the social policies that will lNHERENT STRENGTHS I N VULNERABLE CHILDREN AND INTERVEN-

-
prevent homelessness from occurring by educating policy-makers TIONS. By age 20-30 yr, many children in the United States
that these homeless children are at greater risk of becoming and other developed countries who were at special risk will have
burdens both to themselves and to society if their special health made moderate successes of their lives. Teenage mothers and
needs are not met. children who were born prematurely or in poverty demonstrate
that, by this age, the majority have made the transition to stable
'?IIPY;Y. The rlurrlher ot marriages and jobs and are accepted by their communities as
runaway and thrown-away children and youths in the United responsible citizens. As the numbers of risk factors increases for
States is estimated at about 500,000; several hundred thousand an individual, however, the odds for a successful adulthood
of these chlldren have no secure and safe place to stay. Teenagers decline.
make up most of both groups. The usual definition of a runaway Certain biologic characteristics are associated with success,
1s a youth younger than 18 yr who is gone for at least 1 night such as being born with an accepting temperament. Avoidance of
from his or her home wlthout parental permission. Most run- additional social risks is even more important. Premature infants
aways leave home only once, stay overnight with friends, and or preadolescent boys with conduct disorders and poor reading
have no contact with the police or other agencies. Thls group is skills, who must also face a broken family, poverty, frequent
no different from their "healthy" peers in psycholog~cstatus. A moves, and family violence, are at much greater risk than chil-
smaller but unknown number become multiple or permanent dren with only l of these risks. Perhaps most important are the
"runners" and are significantly different from the one-time protective buffers that have been found to enhance children's
runners. resilience because these can be aided by an effective health care
Thrown-aways include children told directly to leave the system and community. Children generally do better if they can
household, children who have been away from home and are not gain social support, either from family members or from a non-
allowed to return, abandoned or deserted children, and children judgmental adult outside the family, especially an older mentor
who run away but whose caretakers make no effort to recover or peer. Providers of medical services should develop ways to
them or do not appear to care if they return. The same constel- "prescribe" supportive "other" persons for children who are at
I.rtlt,rl 01 ~ a i i s e conininn
\ to rrlJn\ ot tlita orhcr \ p e c i ~ I - r ~ bgroup\I\ risk. Promotion of self-esteem and self-efficacy is a central factor
I\ L ~ ~ . I ~ ~ ~ L [ Po ~t Ipcrrtidrlt'ilt
\ ~ I L ruri.1\C.I\\. i l i ~ l u d ~ nc.n\
q 1ronnit.n- in protection against risks. It is essential to promote competence
rill prul>lt.rns I Cnrn~lyd!.st'urlct~c~n.,~hu\c..po\;crty) a n d per\orl;ll in some area of these children's lives. Prediction of the conse-
pruhlc.rr~\ o f thc ! . t v ~ l r ~ $ person (pc,or impuI\c ronrrol. p\y- quences of risk is never 100% accurate. However, the confidence
c l i ~ ~ p ~ ~ t h o l \oL IgI ~y\ C. . ~ I I C C ~ l ) u \ t . .o r \cliot>l tcai1~irt,j. ' l ' l ~ r o \ ~ ~ n - that,
~ ~ veven
~ ~ ~without
~ aid, many such children will achieve a good
experience more violence and conflicts in their families. outcome by age 30 yr does not justify ignoring or withholding
services from them in early life.
A team is needed because it is rare for 1 individual to be able
to provide the multiple services needed for high-risk children.
Successful programs are characterized by at least 1 caring person
I r \ trt pcrrnarlcrlt runan..i>s Iidvt. serIoii\ ~ ~ i ~ r ipr(>hlc~iis: t.~l r i i ~ r c who can make personal contact with these children and their fam-
tli.ln ;;",, ,irr rhc proJucr of t,irlill~r\ \r.ho engagc in rcpe,lred ilies. Most successful programs are relatively small (or are large
p11\ \IC:II 31itl ~ E X L I ; I I .ihrirc lscc ( - l ~ , i p t c r? h ! . The\c iliilJren , ~ l s o programs divided into small units) and nonbureaucratic but are
have a high frequency of medical problems, including hepatitis, intensive, comprehensive, and flexible. They work not only with
sexually transmitted infections, and drug abuse. Although run- the individual, but also with the family, school, community, and
aways often distrust most social agencies, they will come to and at broader societal levels. Generally, the earlier the programs are
use medical services. Medical care may become the point of re- started, in terms of the age of the children involved, the better is
entry into mainstream society and the path to needed services. the chance of success. It is also important for services to be con-
U.S. parents who seek a physician's advice about a runaway child tinued over a long period.
should be asked about the child's history of running away, the
presence of family dysfunction, and personal aspects of the child's THE CHALLENGE TO PEDIATRICIANS. Concerns about the afore-
development. If the youth contacts the physician, the latter should mentioned problems of children throughout the world have gen-
examine the youth and assess his or her health status, as well as erated 3 sets of goals. The 1st set includes that all families have
willingness to return home. If it is not feasible for the youth to access to adequate perinatal, preschool, and family-planning ser-
return home, foster care, a group home, or an independent living vices; that international and national governmental activities be
arrangement should be sought by referral to a social worker or effectively coordinated at the global, regional, national, and local
a social agency. Although legal considerations involved in the levels; that services be so organized that they reach populations
treatment of homeless minor adolescents may be significant, most at special risk; that there be no insurmountable or inequitable
states, through their "Good Samaritan" laws and definitions of financial barriers to adequate care; that the health care of chil-
emancipated minors, authorize treatment of homeless youths. dren have continuity from prenatal through adolescent age
Legal barriers should not be used as an excuse to refuse medical periods; and that every family ultinlately have access to all nec-
care to runaway or thrown-away youths. essary services, including developmental, dental, genetic, and
The issue of runaway youths is very complex in many devel- mental health services. A 2nd set of' goals addresses the need for
oping nations, where in many instances the youth may be reducing unintended injuries and environmental risks, for
orphaned a n d o r leaving situations of forced sex or other abusive meeting nutritional needs, and for health education aimed at fos-
situations. In 2003, there were an estimated 1 5 million HIV tering health-promoting lifestyles. A 3rd set of goals covers the
orphans in Africa, an increase of 3.5 million in 2 yr. This number need for research in biomedical and behavioral science, in fun-
is estimated to grow to 18 million by 2010. With school atten- damentals of bioscience and human biology, and in the particu-
dance 4 0 % in many parts of sub-Saharan Africa, children who lar problems of mothers and children.
are orphaned are 17% less likely to attend school. Humanitarian The unfinished business in the quest for physical, mental, and
and international organizations have begun to focus on this very social health in the community is illustrated by the disparities
vulnerable group of youths across the globe. Rates are often with which deaths due to disease, injuries, and violence are dis-
uncertain, and in many countries, these children have not even tributed among white, black, and Hispanic children in the United
been recognized as an at-risk group, so great is the social chaos States and between and within nations. Homicide is a major cause
and so massive are the unmet needs. of adolescent deaths and has increased in rate among the very
Chapter 1 rn O v e ~ i e wof Pediatrics rn 9

young, in whom the increase may, in part, represent the more PLANNING AND IMPLEMENTING A SYSTEM
accurate identification of child abuse (see Chapter 36). Among OF CARE
adolescents, homicide may reflect unresolved social tensions, sub-
stance abuse (cocaine, crack), and an unhealthy preoccupation Through much of the 20th century, pediatricians were primarily
with violence in our society (see Part I11 and Chapters 35, 112, focused on the treatment and prevention of physical illness and
and 113). disorders. Currently, physicians caring for children, especially
those in developed countries, have been increasingly called on to
PATTERNS OF HEALTH CARE advise in the management of disturbed behavior of children and
adolescents or problematic relationships betweeu child and
parent, child and school, or child and community, They are
In 2002, children younger than 18 yr made =232 million patient increasingly concerned with problems of mental, social, and soci-
visits to U.S. physicians' offices and hospital outpatient depart- etal health. The medical problems of children are often intimately
ments. This represents 320 visits per 100 children per year, up related to problems of mental and social health. There is also an
from 275 in 1995. Pediatricians report an average of 50 preven- increasing concern about disparities in how the benefits of what
tive care visits per week, 33% for infants. The visits average 17 we know about child health reach various groups of children. In
to 20 min, increasing in length as children become adolescents. both developed and developing nations, the health of children
The principal diagnoses, accounting for ~ 4 0 %of these visits, are lags far behind what it could be if the means and will to apply
well child visits (IS%), middle-ear infections (12%), and injuries current knowledge were focused on the health of children. The
(10%). Ambulatory visits by children and youth decrease with children most at risk are disproportionately represented among
age. The opposite occurs with adults. Nonwhite children are ethnic minority groups. Pediatricians have a responsibility to
more likely than white children to use hospital facilities (includ- address these problems aggressively.
ing the emergency room) for their ambulatory care; the number Linked with these views of the broad scope of pediatric concern
of well child visits annually is almost 80% higher among white is the concept that access to at least a basic level of qualjr ser-
infants than black infants. Children with private insurance are vices to promote health and treat illness is a right of every person.
more likely than children with public insurance who, in turn, are Among children in the United States, having health insurance is
more likely than uninsured children to receive non-emergency strongly associated with access to primary care. The failure of
room care. Insurance coverage increases outpatient utilization health services and health benefits to reach all children who need
and receipt of preventive care by approximately 1 visit per year them has led to re-examination of the design of health care
for children. systems in many countries, but unresolved problems remain in
In 2002, there were 80 hospitalizations per 1,000 children, most health care systems, such as the maldistribution of physi-
down from 1997 (9111,000 children), but up from 2000 (76 per cians, institutional unresponsivenessto the perceived needs of the
1,000 children). White children are less likely to be hospitalized individual, failure of medical services to adjust to the need and
than black or Hispanic children, but more likely than Asian chil- convenience of patients, and deficiencies in health education.
dren. Poor children are nearly twice as likely as non-poor chil- Efforts to make the delivery of health care more e&mt and effec-
dren to be hospitalized. Insurance coverage also appears to reduce tive have led imaginarive pediatricians to create new categories of
hospital admissions that are potentially manageable in an ambu- health care providers, such as pediatric nurse practitioners in
latory setting. industrialized nations and trained birth attendants in developing
Health care utilization differs significantly among nations. countries, and to participate in new organizations for providing
In most countries, however, hospitals are sources of both care to children, such as various managed care arrangements.
routine and intensive child care, with medical and surgical ser- New insights into the needs of children have reshaped the child
vices that may range from immunization and developmental health care system in other ways. Growing understanding of the
counseling to open heart surgery and renal transplantation. In need of infants for certain qualities of stimulation and care has
most countries, clinical conditions and procedures requiring led to revision of the care of newborn infants (see Chapters 7 and
intensive care are also likely to be clustered in university-affili- 94) and of procedures leading to an adoption or to placement
ated centers serving as regional resources-if these resources with foster families (see Chapters 33 and 34). For handicapped
exist. children, the massive centralized institutions of past years are
In the United States, the hospitalization rates for children being replaced by community-centered arrangements offering a
(excluding newborn infants) are less than those of adults younger better opportunity for these children to achieve their maximum
than 65 yr of age, except in the 1st yr of life. The rate of hospi- potential.
talization and lengths of hospital stay have declined significantly
for children and adults in the past decade. Children represent
<8% of the total acute hospital discharges; in children's hospi- HEALTH SERVICES FOR AT-RISK POPULATIONS. Adverse health out-
tals, ~ 7 0 %
of admissions are for chronic conditions. Ten to 12% comes ate not evenly distributed m n g alI children, but are UM-
of pediatric hospitalizations are related to birth defects and centrated in certain high-* populations. At-risk populafians
genetic diseases. may require additional, targeted, or special program designed to
Patterns of health care vary widely around the globe, reflect- be effective with unique populations. All &OXIS, regardless of
ing differences in the geography and wealth of the country, the wealth and lml of industriahation, have s u ~ p ofsdddrul
priority placed on health care vs other competing needs and inter- at particular risk, requiring additional services.
ests, philosophy regarding prevention vs curative care, and the In the United States, the largest vulnerable group is children
balance between child health and adult health care needs. The living in povertyYrepresenting about 14%of US.children. Sub
significant declines in infant and child mortality enjoyed in many stanrial proportions of &en in oher indusPiatized countries
of the developing countries in the past 3 decades have occurred are also living in povenp. The appraad to adresing #&he1 1 4 6
in the context of support from international agencies like of tbis group in the United States bas been the &*fit of
UNICEF, WHO, and the World Bank, bilateral donors (the aid a target~dinsurance pregtam, Medicaid, which b c a t u ~ law iu
provided from one country to another), and nongovernmental 1965 as a joindy funded u n > w venture beiwtm the
agencies to develop integrated, universal primary pediatric care and state g o v m m ~ e ~ttosassist states in tbe propisicm of adtqxate
with an emphasis on primary (vaccination) and selected sec- m e d i d m e to eligible needy pemrme. Tbc federal idan-
ondary (oral rehydration solution [ORS], treatment of pneumo- tifies >2S different eliiliry categoties for which k h l funds
nia and malaria) prevention strategies. are available. These caa be d ~ & into d S
10 rn PART I rn The Field of Pediatrics

broad coverage groups: children, pregnant women, adults in fam- nary group practices or individual physicians' offices. Outreach
ilies with dependent children, individuals with disabilities, and programs
A - that take medical care to the often remote farm sites
individuals 265 yr old. Pediatric care in the United States is highly are necessary, and specially organized Head Start, early educa-
dependent on Medicaid; however, only a relatively small propor- tion. and remedial education vrograms should also be provided.
tion of the Medicaid funds actually go to child health, with the ~ ~ i r o a c h in
e sother countries have also focused on business ini-
r r r n ; i t n d ~ ~st.r\rn,q
r c)lclc~, ~ d u l r s .I;oll(~\r.rriqh r o a ~ in,ir~ori.il gurdc- tiatives for migrant populations to enable them to overcome the
1inL.s. ciich \l.lte r.\ral>l~shrsI C S oil-n tlrgih~lir>-ht,ind;tr~is; J r t c r - cycle of financial dependency on their migratory lifestyle.
mines rlic rypi., cinioLlnr, ~ L I I . J ~ .1rlC1 I ~ I \Ii o. l > C o t \crtIci'$; S C ~ \ rlie The United States has spent >$I0 billion through the 1987
rLirro t p L ~ y r ~ ~ ct tr>1rr\crirce,: .i~iJ~ i ~ i n ~ r n ~ i1tr e5 r0 \s4 ' 1 1 proKr.lm. McKinney Act to provide emergency food, shelter, and health
c ~ II I I J L I C g r e ~ t\ t r ~ ~ l ~111. i crirolli~ig IOLV-
. - \ l t l i ~ ~ i ~, \~l lci~ ~ r ~ aI1,is care; to finance help for young runaways; to aid homeless people
rriiornt cll~ldrerl,zr~r~rhc.inrn i ~ l i l l ~ c rost ihr1drr.n renl.lrll u r i ~ n - in making their way back into the housing market; and to place
sured. From 1988 to 1998, the proportion of children insured homeless children in school. Mobile vans, with a team consisting
through Medicaid increased from 15.6% to 19.8%, but the per- of a physician, nurse, social worker, and welfare worker, have
centage of children without health insurance increased from been shown to provide effective connprehensive care, ensure deliv-
13.1% to 15.4%. Minority children were disproportionately ery of immunizations, link the chiltjren to school health services,
among those without insurance. The Balanced Budget Act of and bring the children and their f,amilies into a stable relation-
1997 created a new children's health insurance program called ship with the conventional medical system. Special record-
the State Children's Health Insurance Program (SCHIP). This keeping systems have been introduced to enhance continuity and
program gave each state permission to offer health insurance for to provide a record of care once the family has moved to a per-
children, up to age 1 9 yr, who are not already insured. SCHIP is manent location. Because of the high frequency of developmen-
a state-administered program and each state sets its own guide- tal delays in this group, linkage of preschool homeless children
lines regarding eligibility and services. There is great variation by to Head Start programs is an especially important service. The
state, but in many states, the SCHIP program has begun to reduce Runaway Youth Act, Title 111 of the Juvenile Justice and Delin-
racial inequities in access to health care for children. quency Prevention Act of 1974 (Public Law 93-414) and its
h1.11i? I I I L I L I \ ~ ~ I . I l i ~ ~ . cr j~ ~ ~ t r o rhi.\~ L,t , ~ c + ~ ~ >d t~t tdt ~ r c n"ti ,tcty
~ amended version (Public Law 95-509) have supported shelters
~ict'.\y,rcnl\ to .I\\urc . I J ~ ~ L I ~ I Wot ~ l ~l ( I L I I IhLLiti\
covrrcigc8 I. ot and provide a toll-free 24 hr telephone number (1-800-621-4000)
t h e w progr,Irn> prtrvrdc Iic,llrh Irlsur.lnic tor ,111 i h ~ l d r t , n r. r g . ~ r J - for youths who wish to contact their parents or request help after
IF\\ ot rriccl~~~c, l i u p ~ n gro J ~ O L L I p r o l ~ I ~ . r i\vrtli
~ , ~ I ~ l l J r e10\11ig
n having run away.
i r ~ \ u r . ~ r i(>\-rr,lgc
li~ .IIIJ.ICCCZ\ 1 0 hr.iItl1 i.iri. due, cllanqe\ In In Belgium, Finland, the Netherlands, Portugal, and Spain, the
cligil?ilit~-IT! prc~v~cirng<I single t(3rrn 11t Insur,xrlii. that .ill right to housing has been incorporated into the national consti-
providers accept. The response of developing countries to the tutions. The Finnish government has devised a multifaceted
issue of universal access to care for children has been uneven, response to the problem, including house building, social welfare
with some providing no safety net, but many having limited uni- and health care services, and the obligation to provide a home of
versal or safety net services. minimum standards for every homeless person. The number of
To address the special needs of Native Americans in the United homeless in Finland has been reduced by 50%.
States, the Indian Health Service, established in 1954, has been
the responsibility of the Public Health Service, but the 1975 COSTS OF HEALTH CARE
Indian Self-Determination Act gave tribes the option of manag-
ing Native American health services in their communities. The
The growth of high technology, the increasing number of people
Indian Health Service is managed through local administrative
older than 65 yr, the redesign of health institutions (particularly
units, and some tribes contract outside the Indian Health Service
tor hc.3lrh i.lrc. \ l ~ ~ i ot' l i t l i i eninh.~\r\I \ o n . ~ d u l iser\.lic\: rrc,~r-
with respect to the needs for ancl the uses of personnel), the
public's demand for medical services, the increase in administra-
tive bureaucracies, and the manner in which the costs of health
care are paid have driven the costs, of health care in the United
States up to a point at which they represent a significant pro-
portion of the gross national product. Although children (O-
18 yr) represent about 25% of the population, they account for
only about 12% of the health care expenditures, or about 60%
of adult per capita expenditures. Efforts to contain costs have led
to revisions of the way in which physicians and hospitals are paid
o t L~tiy(11 t l ~ r \ cprogr.lIn\, t*ipc>L.~,~lly t l i ( ~ \ ero pr~~vL,ritJIIJrre'lr for services. Limits have been set on the fees for some services,
capitated prepayment and various managed care systems flour-
thr prfub\rrni p ; i r r l i ~ ~ I ~ ~h .r ~ t i v c2~\ri~crrc.~ri\.
ish, a program of reimbursement (diagnosis-related groups
1 ~ 1 5nor brr.ll ~ l c t c r m ~ n c ~ d .
[DRGs]) based on the diagnosis rather than on the particular ser-
Kecognri.~n; rllr lie.~[rlinccJs o t r n i y a n r i 111 the Cnrrecl lir.~rr\.
vices rendered to an individual patient has been implemented, and
thr I 1 . i . I ' i ~ I l l ~ iI lc.~ltil ( c r c ~ s r 1111t1,ltcii111 1')b-I i h r \ l ~ g r , i n t
a relative value scale for varying rates of payment among differ-
I Icaltll P r r y r , i n ~r c ~p r o v ~ d cl u ~ ~ c tor l s Ioc,>l y o u p to O I . ~ . ~ I I I Z ~
ent physician services has been instituted. These and other
rrlcJi~.=~l i;lrc. t o r rrIly.Int t a r n ~ l i r shl.iny
, rnrgr.int Ilc,tlth proleits,
changes in the system of financing health services raise important
whrch u r r r \ r . ~ t i1lrti.111y~J h! p.lrt-tlmc prc)v~ci~,r> and Lvrrc l~pcli
for 0111y p.11-t o t thc !cclr, li.~c-c~ C , ~ tr,1ri\t~rrnic11
I I rrito c~irrlniuri1t\
ethical, quality of care, and profesriional issues for pediatricians
to address (see Chapter 3).
hr.llt11 i.lrr crntcr-< rll,~t provide icrvlccs r ~ o tonly tot. nngr,xnrs,
l r ~ r t ~ l c ohlr ott1t.r Iocnl reb~denrs. 111 20(11. the =400 h l r ~ r a n t
Health care costs have been better contained in most other
industrialized nations, the majority of which also enjoy lower
kfr.~lth C:cnrcr\ \el-rcd >bi0,01)0 nilgr.lrll ~ r t d\c.~s~>n.il tjrln-
\k,orker,: >S<''8, t\trL, people ~ )ic)Ior. i Hc.11111 \ervlcc.h tor tTilgrL1rlt
childhood mortality rates than does the United States.
t~rlnu.rrrkc>r.;ot'rrrl n c t d t o Iw org:11117cclsep~r.~rrl!.froni existin!:
pr1111;ir! '.1rc ~ i s o g r , ~ r nl)cc,j~rse
\ the fam~lri's.ire 1111gr~[or.y. Spcc1.11 EVALUATION OF HEALTH CARE
r e s o r ~ l . k r e p r r ~\)\tc1115
g i h ~ link
r tllt. health i.1l.c [ ~ r o v ~ r l Jt ud r i n g
wlnrcr mc>nttls rri rhr south \r.~ththc c j r e pr-i)vidcd Jtrrrng the The shaping of health care systems to meet the needs of children
mrprdrory S ~ . I \ O I I i l l t h r riortll dre clitfiit~lit ~ ~) l i ~ ~ r r irnt ~ r-)rei~.
in and their families requires accurate statistical data and difficult
Chapter 1 . Ovewiew of Pediatrics . 11

decisions in setting priorities. Along with growing concerns about Malaysian Pediatric Association was started about 25 years ago,
the design and cost of health care systems and the ability to dis- and the Canadian Pediatric Society was founded in 1922. These
tribute health services equitably has come increasing concern societies represent but a few of the many national and regional
about the quality of health care and about its efficiency and effec- pediatric professional organizations around the world.
tiveness. There are large local and regional variations among The amount of information relevant to child health care is
similar populations of children in the rates of use of procedures rapidly expanding, and no person can become master of it all.
and technology and of hospital admissions. These variations Physicians are increasingly dependent on one another for the
require continuing evaluation and explanation in terms of the highest quality of care for their patients. About 25% of pedia-
actual impact of medical and surgical services on health status tricians in the United States claim an area of special knowledge
and the outcome of illness. and skill, including 15,000 who have board certification in 1 of
The Institute of Medicine (IOM) issued a report, "Crossing the the 13 pediatric subspecialties with board certification. Each year
quality chasm: A new health system for the 21st century" in about 10% of the ~ 3 , 0 0 0pediatric residents training in the
2001. This report, challenging American physicians to renew United States are enrolled in a dual residency training program
efforts to focus not just on access and cost, but also on quality that will lead to eligibility for board certification in both pedi-
of care, has been furthered in several pediatric initiatives, includ- atrics and internal medicine.
ing but not limited to: specific initiatives for monitoring child The growth of specialization within pediatrics has taken a
health outlined in the IOM report "Children's Health, the number of different forms: interests in problems of age groups of
Nation's Wealth," challenge/demonstration grants funded by the children have created neonatology and adolescent medicine;
Robert Wood Johnson Foundation, the National Initiative for Intc.rcit\ In org;ln systems havc crcatcd pediatric cnrtlir~log!;.11~11-
Children's Healthcare Quality, and training initiatives by the Fed- rnlog,, i h ~ l ddevelopment, allergy, hematology, ncphrology, gas-
eration of Pediatric Organizations. Importantly, each of these ini- rrtrr~~~t~r~)logy, chilJ psychiatry. pulmonology, cnclocri~lcology,and
tiatives is calling for the establishment of measurable standards , ~ W ~ I . I I I Z ~ ~ I ~ IinI ~netabol~smand genetics; interests i r ~the hcnlth
for assessment of quality of care and for the establishment of i,irr \\stem havr created pcdiatricia~lbdcvoted to a~i~bul;~tory
routine plans for periodic reassessment thereof. Efforts have been c.trc, rmergcncy care, and intensive care; and, finally. ~iiultidisci-
initiated at some medical centers to establish evidence-based clin- I > l ~ n : l r v\uhspccinlties have grnwn up around the prohlcms of
ical pathways for disorders (such as asthma) where there exists h.~nJ~cappcd cli~ldren.ro which prdlatrics, ncurolog, psychiatry,
sound evidence to advise these guidelines. Pediatricians have pcychology. nclrslng, physical ant1 occupational rliernpy. special
developed tools to evaluate the content and delivery of pediatric rducat~on. speech rlicrapy, ~udiology. ancl nutr~rion all make
preventive "anticipatory guidance," the cornerstone of modern c\sc.rir~,~l contnhut~ons.This growrli of sprc~aliz~rion has been
pediatrics (see Chapter 5). nio\i conspicuous in univer.tiy-affiliated dep~rtrnerlrsof pedi-
Increased attention has been focused during residency training atrics and medical centers for children.
and as part of continuing education on the importance of pro- In the United States, most subspecialists practice in academic
viding pediatricians with the skills to communicate effectively settings or children's hospitals. Likewise, specialists are growing
with parents and patients. These efforts are having an impact, in number in other industrialized countries and in developing
with evidence that 66% of children are receiving good or excel- nations that are becoming industrialized.
lent preventive care with no disparities according to race or
income level. The increased focus on quality improvement in
pediatric practice is reflected in the pediatric residency training NEED FOR CONTINUING SELF-EDUCATION
competency requirements of practice-based learning and
improvement- and system-based practice. -1-h~rsplt,\~onof ~ n t o r m a r ~ has o l ~also created rlcw cliallengrs for
ir-,nrlnulng rJucnrion. In e~~rlicr vcars, new intornm.~t~cjn in any
liclcl ot lnrJ~c~nt. W A S easily acccwihle through a rclarively small
ORGANIZATION OF THE PROFESSION AND THE 111111il)cr o t 10~1r1131s. texts. or monugraphs. 'PocIav, rrlev~tltin for-
GROWTH OF SPECIALIZATION rri.ltlon I, ,o widel>-Jispersed anlong the many jourrials rhat elall-
c,rdtc i~lcitro~i~c d;itd <y5te11isarc necessary to m;lkc it accessible.
The 20th century witnessed the formation of professional soci- 'I'lic Inrcrnet hds dramatically improved access to ~nform;lrio~~ hy
eties of pediatricians around the globe. Some of these societies, rh\~s~ii.in\ ,IIICI pnticnts, birr iudgrne~~t aboi~tthc quality, clinical
such as the American Board of Pediatrics (ABP), are concerned \~gn~tii.ince, ,iccuracy, bias, and approprinre iise o i s~lchrnii~r-
with education and the awarding of credentials certifying com- tn.lrltrri I, ,i cli,~llen~e. 111 2002, 95",L of pecliatriciar~ssurceyrd
petence as a pediatrician andlor a pediatric subspecialist. At the r c l x ~ t ~mlng d ;I ctrlliputcr in the office; jO'!;',rrportcd accessing
beginning of 2004, the ABP reported that there were =79,000 rlic, Intcrner d;i~l!; rnc~srfor medical ~nforrnario~~. C)nr thirtl used
board-certified pediatricians. Among those presenting for 1st time .I 1wr\ori;lI Jig1ta1 .~ssiar~~nt. most f r e q u ~ ~ t ltor
y hclieriuling 2nd
certification to the ABP in 2003, 80% were American Medical t o r .lCiC'F\ [ ( I ph,1r1113colt)gyrcfcrences. O~il\r14'L rcportcd i~sing
Graduates (20% were International Medical Graduates) and r1ii~11 to cnmnillnlcate w ~ t hpnrienta. although ~trotlt5031 would
63% were women. Other societies are primarily concerned with . ~ i i c p 1vescr1pti01i
r ri.till rcqucsts I>y elnail. The A~nrl.~can Board
organizing members of the profession in their country or region o t I)cLl~.1tr~c.; and rllr ..\nicrican Academy ot Pcd~ntrics have
to dedicate their efforts and resources toward children. In the arranged for close linkage of continuing education of pediatri-
United States, the American Academy of Pediatrics (AAP), cians to recertification in pediatrics.
formed in 1930, currently has a membership of =60,000 child \X:l~t.rcasthe lritcrner is important in rhr Unired Stntes, ~r is rev-
health specialists in both academic and private practice. Most oIut1(11117in~ .~ccess10 nied~calknowledge in cievcloping ~11dIran-
general pediatricians in the United States enter private practice; i ~ t ~ o ~ iounrrlcs.
inl Prcvinusl!; medical schools in rliesr scttings
=66% are in group practices, 5 % enter solo practice, and 5% nerc Iirghl, ilcpcndent on slow and oitcn irnpreclicratllc mnil
work in a health maintenance organization. The AAP provides \y.;rrrn\ 10 connect them with medical advances. new directions
a variety of continuing educational services to pediatricians in 111 mcd~cal prnctlct., and rned~calcolleagues in ge~icral.Now,
multiple national and regional settings and tracks the professional rn;iri\ I I the ~ same schools h a v c inirnediatc access t o hundrcds of
activities and practices of its members. A comparable group in l c r \ ~ r n . i l iant1 thc~rprutessional counterparts across rhc glnlx.
India, the Indian Academy of Pediatrics, was formed in 1963, and I'11t.r~ is n o rouchstorie through which pliysizr~~~s can ensure
now has >13,000 members and 16 subspecialty chapters. Like- t1r.1~ thc proccss ol' their own continuing education will keep them
wise, the Pakistani Pediatrics Association is >35 years old, the . ~ b r r . ~ot > r.idva~icingknr>wlrdgc in the field, Iyut they must lint1
12 .PART I The Field of Pediatrics

a way to base their decisions on the best available scientific evi- Black E, Morris S, Bryce J: Where and why are 10 million children dying every
dencc ii [hey ,+rc to discharge thrir rospor~sihil~ty
to their parients. year? Lancet 2003;361:2226-2234.
An cswnt131elerncnt of thrs process rnay he tor physicians t o take Dwivedi KN, Banhattie RG: Attention deficithyperactivity disorder and eth-
nicity. Arch Dis Child 2005;90:i10-i12.
a n asrivr role, such as participating in tnedical student and resi-
Ebbeling CB, Pawlak DB, Ludwig DS: Childhood obesity: Public-health crisis,
dent cducarrc~n.Efforrs in continuing self-education will also he common sense cure. Lancet 2002;360:473-482.
t{-~litrrcdli clinical proble~nscrin hc made 3 stimulus for a review Haskins R, Greenberg M, Fremstad S: Federal policy for immigrant children:
of standard literature, alone or in consultation with an appro- Room for common ground? Future Child 2004;14:1-6.
priate colleague or consultant. This continuing review will do Honon R: Indigenous peoples: Time to act now for equity and health. Lancet
much to identify those inconsistencies or contradictions that will 2006;367:1705-1707.
i n d ~ c a t In ~ , tlir ultirn.~tc best interest ot p.~ticnts. rhar t h ~ n g sarc Khamis V: Post-traumatic stress disorder among school age Palestinian chil-
r,ot what the? seem o r have heen stlid to he. I'llys~ciilnsstill learn dren. Child Abuse Negl2005;29:81-95.
nlcrst trom rhrir patients. Llut t h ~ s\v11I nor be rhe case if they fall Kochanek K, Smith B: Deaths: Preliminary data for 2002. Natl Vital Stat Rep
irjtcr thc c;wy t ~ a h ot ~ t accepririg thrrr pnr~ents'problems casually 2004;52:147.
Lancet: Getting it right for children: a review of UNICEF joint health and
or 3 t t-ice value I>ecau\e the prohlerns appear to I>e simple. nutrition strategy for 2006-2015. Lancet 2006;368:817-818.
'I'hr t~rolsthat physicians must LISK rn ~ie.al~ng with the proh- Laraque D, Boscarino JA, Battista A, et al: Reactions and needs of tristate-
lrms r r t chrldrCli and t h e ~ rt;iniilie~t ~ l into l thrce niain categories: area pediatricians after the events of September 11th: Implications for chil-
i . r ~ g t f l ! l f ~ c ,(try-rn-date tactu.11 i ~ i t o r r n a t ~ oahout
n diagnosrrc and dren's mental health services. Pediatrics 2004;113:1357-1366.
rhrrapcut~cissuri, ' ~ v ~ i l n h lon e recall or e.lsily found ill readily Marmot M: Social determinants of health inequalities. Lancet 2006;365:
accr.ss~hlert>trrccs. ~ n c the l n h ~ l ~ ttoy relate this inforlnat~ont o the 1099-1104.
parl~ophl;sicrlog>trt t h r ~ pdtlcnts r In the contest of ~ndividualh ~ o - Navarro V, Muntaner C, Borrell C, et al: Politics and health outcomes. Lancet
locii ~ , ~ ~ r ~ ~ ~ ~l ~! zi I~i ct ry /j ~: ~ ~o r sWoI ,tI ~? I~I I ~~{the
l A bil~tyro carry out 2006;368:1033-1037.
Oberg CN, Rinaldi M: Pediatric health disparities. Current Problems in Pedi-
n prnduitive rnrrrvleiv. r e c u t r 3 relrahle physical c u ; \ r t ~ ~ ~ l a t ~ c ) n ,
atric and Adolescent Health Care. 2006;36:245-276.
ycrtorlri .I deft vcnipuncturc, or nldnagr cardiac arrest o r resu\- Okie S: Global health: The Gates-Buffett effect. N Engl J Med 2006;355:
iir.ltion o f a depressed newhorn infant): and , ~ t t r t r c d / t r ~( t~hle 1084-1088.
phyii~iari'\ u n ~ e l f s hcommirnicnt to the tullest possible ~niple- Pearson HA, Anunziato D, Baker JP, et al: Committee report: American pedi-
rnrnt.~rlnrioi kno\vleclge ~ n sdk ~ l l os n behalt of chililreri and t h z ~ r atrics: Milestones at the millennium. Pediatrics 2001;107:1482-1491.
taniilir> rn a n atmosphrre ot crnpntluc sen\ltlvlt)i ,xnd concern\. Santos Pais M, Bissell S: Overview and implementation of the UN convention
With rrpard t o thi\ last catrgorl;. ~r 15 Irnport.lnt thar cli~ldren on the rights of the child. Lancet 2006;367:689-701.
participate with their families in informed decision-making Srivastava R, Norlin C, James BC, et al: Community and hospital-based physi-
about their own health care in a manner appropriate to their cians' attitudes regarding pediatric hospitalist systems. Pediatrics 2005;115:
stage of development and the nature of the particular health 34-38.
United Nation's Children's Fund (UNICEF): Children in jeopardy: The chal-
problem. lenge of freeing poor nations from the shackles of debt. New York, UNICEF,
The tvrlrkC~d.iynccdi of prote,rlon:ll persons tor knowledge 1999.
. ~ n dskill\ rn <arc oi ihildrrrl vary \videly. Primary care physicians United Nation's Children's Fund (UNICEF):The state of the world's children
r~rrcldcprh 111 dcvelo~>rnerlta1concepts ;and In the ~ h ~ l to i norga- 2005. New York, UNICEF, 2004.
tlrrr .In cttrcr~ves y s t ~ ~ rtor n ~ c h i r v i n gqu311ty dnd conrinuiry rn US Census Bureau: Income, poverty, and health insurance coverage in the
.15\~>\.;lng.ind p l a ~ l n ~torn ~health care during the entlre pcriod of: United States: 2003. Washington DC, US Census Bureau, 2004.
growth. The!- rnay often hiivc I~ttteo r no ncrd tor immediate US Department of Health and Human Semices, National Center for Health
rccall oi r\otcrica. O n rhc other h ~ n c l consl~lrants , o r \uhspeci.ql- Statistics: Health, United States, 2004. Trends in the Health of American
I ~ K riot S only need a corntortable grasp ot both common ant1 Chartbook. Washington, DC, US Department of Health and Human Ser-
vices, 2004.
Ilniornrnon iacrs wrthin rhcir held and perhaps \vlthin rel:ltcd Woolf SH, Johnson RE, Geiger HJ: The rising prevalence of severe poverty in
fkldr, h~rcn k o rntrst be dhle t o copc w ~ t hcontrovcrsr;ll Issues with America-a growing threat to public health. Am J Preu Med 2006;31:
tleuihilrty thar will pcrrrilt a d a p t a t ~ o nof various pornrs of vrew 332-341.
to the Ivst lrltercit o f their unicl~rcpatlent. Zuckerman B, Stevens GD, Inkelas M, Halfon N: Prevalence and correlates
:It ~vharzverIevcl ~i cart. (primary, secondary, or ternary) or of high-quality basic pediatric preventive care. Pediatrics 2004;114:
in \vh;itcvrr po\irinn (student, pcdiatr~cnurse pract~tioner,resl- 1522-1529.
rlcrlr ped~.~rrician, pr.lstrtioner of pedi'lrriis o r f'lrnily- rrled~cinc,
o r p e d i a r r ~ ior other ~ubsprcrali\ts),professlonnl persons dealing
w ~ t hi h ~ l ~ l r rnlusr
n he ~ h l ro e identity their roles o t the rnornent
;and rlle~rfcvcl\ ~i engJgerncrlt w ~ t h.I cliild's problem; each musr
cicrcrn~irirwhether his c>r her cxperlence and other resources a t
harid are adequate to deal with this prohlcrn . ~ n dmust he ready
to scek othcr hclp when rhey are not. Among the necessary
rt.sorlrcr\ are gcneral tesrhnoks. more dcrallcd monographs in Chapter uality
and Safety Health in
\ul~.;pccr;~ltyarc'ls, celected journals, ~ ~ c c c to s s Internet materials,
auriiovisual didi. .qnd, ilhovr all, culleagues with euccptional or
~ . o ~ n y l r m c n t ~rsperlcnce
ry and espcrtise. T h r intercomni~rn~ca-
Care for Ch ren Lannon Carole I
I I ~ I I Io i all rhcse levels of engagement with rned~ialnnd hcalth
prohlenr~o i ihrldrrn otfcrs thy best hope of bringing us closer ro THE QUALITY GAP
the goi'l o t providing rlic opportunity tor all children t o ashievr
their rnaslmurn potenrinl. Some care, for some children, some of the time is excellent: evi-
dence-based,responsive to cbitd and family needs, and muItiag
in supwb outcomes. Advances in public trealrh, management of
hk&ous and other diseases, and ~cchnologyin the p&r century
Annie b. Casey Foundation: African-American Children: State-Level Measures have d~ immved the health of &dm and fadies. Desoiw
of Child Well-Being from the 2000 Census: Kids Count 2003. Baltimore, con&d && by physicians aud dedicated d i n k t tea&, a
Annie E. Casey Foundation, 2004.
Anell A, Willis M: International comparison of health care systems using
resource profiles. Bull World Health Organ 2000;78:770-778.
2 e gap exism baur~rrenItnowledge and practice. These are sig-
cant vatiations in the outcomes of care across providers and
communities, in the utilization of appropriate care, in disparities
Chapter 2 Quality and Safety i n Health Care for Children . 13

of care for ethnic and minority children, and in the safety and use of a structured assessment to appropriately diagnose a child
quality of care for all children: with attention-defi~itlh~peractivity disorder (ADHD) is a process
- One quarter of young children are not up-to-date on immunizations
measure. Similarly, the proportion of families of children with
asthma that receive a written asthma management plan is a
One third of parents of young childrenare not asked about their child's speech and language process measure. Process measures are the usual targets of quality
development improvement interventions, as making changes in practice
Less than half of adolescents discuss health behaviors with their clinician involves addressing particular clinical processes.
Up to three quarters of sexually active adolescents do not receive chlamydia screening Outcome measures descr~behow the care del~veredaffects the
One third of children with persistent asthma do not receive a prescription for long-acting patient's health, health status, or function. Emergency depart-
medicationsto control their asthma. ment (ED) vlsits or hosp~talizat~ons due to asthma exacerbations
Across cystic fibrosis centers, patient life expectancy varies by as much as 14 yr are considered outcome measures. Health outcomes may occur
The Institute of Medicine (IOM) highlighted this gap between infrequently and are often influenced by a varlety of factors.
knowledge and practice. "At no time in the history of medicine Improvement efforts often focus on structural or process mea-
has the growth in knowledge and technologies been so profound sures that have been proven to be assoc~atedw ~ t hhealth out-
. . . As medical science and technology have advanced at a rapid comes. Research has shown that the use of an asthma
pace, however, the healthcare system has floundered in its ability management plan (a process measure) results in decreased hos-
to provide consistently high-quality care to all Americans." pital~zationsand ED v~sits(outcome measures).
Qual~tymeasures descr~bean observed level of performance
(percentage of hospitalized children w ~ t hbloodstream infect~ons
WHAT IS "QUALITY CARE"? related to central lines) but d o not address why the result is at a
certaln level or the factors that contr~buteto ~ t Mult~ple
. factors
Avedis Donabedian posited that "the balance of health benefits have been shown to affect the rate of central line ~nfect~ons,
and harm is the essential core of a definition of quality." An IOM includ~ng handwash~ng protocols, barrier protection during
report defined quality of care as "the degree to which healthcare 11i\crtion, 41id , l n r l r r p t r c p r e p c i r a t l o n .
services for individuals and ~onulationsincrease the likelihood
1 L

of desired health outcomes and are consistent with current pro-


()LI,I~I~\ i1icd'rurr, c.111 h e ~ n t l u c n c r dbi .I varlet> of I,ictc>is,
i n c i ~ ~ iil,lra i ~ n a~\ a ~ l , i b i l i t \ , il,ira a~cur,Ic$ ~ r l ~d o ~ n p l e r r ~ l rdnd \\.
fessional knowledge." p.Itiril1 ~ l l d r ~ c r e r ~ 4\ t1~~ ~l >\ r ~ i n< ihr a ~ u r r s~ l i o u l lIlw ~ l d l u s t c i tl o r
The IOM described quality in a goal-oriented manner and ] i . l t ~ c l ic~l ~ ~ ~ r , i L t e r( "i L~ Jr~~c ~' lni\.''
\ " ~ e k r r ~ .r itd l u \ r n ~ ~ ~I.l tt "I l c \ c
established 6 aims for the 21st century health care system: safe, ~ l i t t e r e n c e sc,ln h i g h l ~ g l i rImport'int I,lcror\ in iL1rt.ltloil \IIC~I
effective, patient-centered, timely, efficient, and equitable (Table disparities In care between races. Further, patlent character~st~cs
2-1). Implicit in these definitions is the idea that quality compo- are not lim~tedto biolog~cconsiderations but also Include per-
nents can be measured and improved. sonal, soc~al,and cultural Issues. Q u a l ~ t yof care can be described
as the best possible science in the context of what the patlent
HOW DO WE MEASURE QUALITY? wants and needs (patient-centered care).

A quality measure attempts to quantify the nature of the care cur-


rently being provided and what that care would be like if based THE USE OF MEASURES
on the current best evidence as determined by pre-established cri-
teria (www.ahrq.govlqual1measurix.htm).Three different com- Measurement for continuous quality improvement can be used
ponents to assess the quality of health care are: structure, process, t o h v l p .I p r . l c t l i r o r org.~nir.atror~ u t ~ d r r \ t a n r i rrh II\VII iarc
and outcome. p r o t r s \ r r a, w e l l J\ undcr.;ranJ how rts p c r t o r n l c $ r ~ i icr ) l r j p n r c r
Structure refers to the resources and organizational character- r o otherh. A p r a i r l i e or orji3rli7,ltioil 2311 IIW cj.1t.1 tl) i o l l l p a r C I ~ S
istics that are in place to deliver care. Examples of organizational p ~ ~ r t o r r ~ ~ , ~( In) cag,llnst
r: i t ~ c l ot v e r t1111t.. ( 2 )dgak1111Io t h r r ores-
characteristics include the type of care provided (primary, spe- I ~ I / . ~ ~ Ii c~j Il lI~>. c t ~ nJJLI
g in r h r s;1111r w a y a l t d u ~ i n ryh r r d l l l t ' 1 1 1 ~ ~ -
cialty), the supports to provide care (number of nurses staffing a \ilrc\. a r ~ d { ) r o i n ~ l u s t r ! Ic;~der\ o r c s c n l p l a r y p c r t c m n ~ l ~ g
pediatric intensive care unit, the percentage of board-certified organizations. This is benchmarking: Initial steps in improvement
pediatricians at a facility), and the use of specific systems for efforts involve the use of measures to document performance gaps
improving care (an electronic health record or registry). Accred- as well as identify and learn from high functioning organizations.
itation by recognized national organizations, such as the Joint The I O M has outlined uses of quality measures that involve
Commission on Accreditation of Healthcare Organizations, is accountability as well as improvement: (1) ensuring the rapid
based in part o n assessment of structural characteristics. translation of clinical research into practice; (2) holding providers
Process measures address how care and services are provided accountable for delivering high-quality care; (3) setting standards
(assessment, evaluation, diagnosis, treatment). The frequency of o t p . i r r ~ c ~ p , i t In r Jnr r , i l l ? 3 p o n s o r e J progral-115 i n c l u d i ~ ~hlcdi-
~ ~f ~ g
;,~IJ. K f111'. Title V, :III~c o ~ i i n ~ u ~h~c i: ~t yI t l iccntei-5: (4:) IIcI~II>~
- p ; l r c n t \ .~ndpul-chasrrs makc c h o ~ z r \ ; ( 5 ) r s r n b l r ~ h i r l gI ~ z r l c h -
W 3 - I . crossingthe Quality Chasm m,irk, t o > r i m ~ i l ; ~ r rlualit!
e Im[>rovzmetlt: a l l d ( 6 ) s o n ~ i ~ r i t i n g
ongoing ~ ~ n r i o n . \urvcill;liice
ll on trends i n qualiry. I ' h c s c a p p l l -
, c ; ~ r i o i ~l \i ~ v ct l ~ ep < ~ t ~ i i ttioi ~~Ii i v ( ~ l Av cv:jricry of ilser\. ~ n c l i ~ ~ l i n g

I
> ,

Effective: providing services based on scientific knowledge to all who'could benefit and refraining I>,I~I~IILS. p r o v i J e r s . p~ircha.;ers, paycrl, I,i~s~rles:. ct~;ll~ric~n.c.
from prov~dingservices to those not likely to benefit accrediting organizations, and government.
Patient-centered: providing care that is respectfulof and responsive to individual patient preferences,
\ l u l t ~ p l ~measure'.
, o t q u a l i t y r h a t a q s r s \ v a r ~ o ~i c ~r msp o n e n t s
needs,and vaiues and ensurlng that patlent values guide all clinical decisions
o t .i sl?rc.itic . i \ p c i i nt l i c a l t h care may he crlecrrcl r o g i v e n m o r e
Timely: reducing walts and sometimes harmful delays for both those who recelve and those who glve
i ~ ~ m p l c pt ci c t u r e ot overall p r r t o r t ~ i a n r ra n ~ rllc,rcasc
l thr r r l i a -

I
care
Efficient:avoiding waste,including waste of equipment,supplies,ideas,and energy I 7 1 l i t i ot r l l v re.iulr. ;2 starr agency may i h < ~ t r s cto use s r v r r a l
Equitable: providing care that does not vary in quality because of personal characteristics such as p , i r c n r ~ lp c r i c p t i o n mensurcs as well as sevei-ill rneasurus oF the
gender,ethnicity,geographic location,and socioeconomic status d c l i v e r y 01 p r c v r n t l v r carr t o Llssrss the qualit!- (11- a h c a l r h p l a n
From lnst~tuteof Medlc~ne.(omm~ttee on Quality Health (are In America,Crosring the Qualiry Cham
i :A New Health System for o r progr.1111 i n J e l ~ v c r i n gh r a l t h cdrs t o c l l r o l l e d children. By idrii-
the 2181 lenrury Washington, DC, NationalAcademy Prers.2001 Reprinted w~thpermission from the Nat~onalAcademies tit! i n & variar1on.i in carr. o p p r j r r u n i r ~ r stor i l r ~ p r o v e m c n tand l x ~
Press,(opyrqht -02 crlpnfec
prncr1cc.s car1 I w idcnrified ~ ~ ~ \ ~ ~ . ~ h r t ~ . ~ o v / q l ~ ~ ~ ~ l n ~ c a r u r ~
14 . .PART I The Field of Pediatrics

One example of an effort to effect change by understanding


t I- Goal and addressing gaps at all four levels of health care and their
interaction is the development of a multifaceted American
Academy of Pediatrics (AAP) program, "From Policy to Practice:
Improving care for Children with Attention Deficit Hyperactiv-
ity Disorder (ADHD)," which translates guidelines for the diag-
nosis and treatment of ADHD into clinical practice. The ADHD
effort consists of a several-year program of coordinated activities
targeting the various levels of the health care system. It includes
advocacy efforts to dismantle financial and organizational obsta-
cles to promote timely access to care in the medical home setting
(environment). Structured educational opportunities support
improved care in AAP chapters and residency programs
(macrosystem). These opportunities provide clinicians with prac-
0% 1o o O o
t tical tools as well as a web-based continuing medical educa-
Improving tionlquality improvement program (the AAP's Education for
Improving q ~ l a l i t ) by r e d u c ~ n gv a r ~ a r l o nand s h i f t ~ n gthe mean. Quality Improvement in Pediatric Practice, www.eqipp.org)
l n l s IS ~llustraredin an example from the End-Stage Renal D ~ s e a s eRegistry [microsystem]. AAP also developed multiple resources for chil-
(see Fig. 2-4) dren and families, such as a parent education brochure, a full-
length book, a video, and patient education materials for teens
(patient and community). A key component of this effort has been
With enough available data, a quality measure is likely to have
supporting the development of systems for improvement at the
a normal distribution curve (Fig. 2-1). Quality improvement
AAP state chapter level for clinicians, families, and schools. AAP's
methods aim to standardize the process of care and improve out-
effort demonstrates how a theoretical framework can aid in the
comes by narrowing the distribution and shifting the curve to the
design and implementation of improvement efforts, including the
right.
use by clinicians and in practices of improvement science to
Table 2-2 provides a framework for achieving the I O M 6 aims
implement successful strategies for change at the microsystem
or goals for the 21st century health care (see Table 2-1).
level.

PRACTICAL STRATEGIES FOR IMPROVEMENT:


THE FOUNDATIONS OF IMPROVEMENT SCIENCE
I Environmentalcontext
II Macm-organization (health care organizations)
Ill Micmsvstem of care deliverv (oractice) The foundation of improvement science consists of the interplay
IV. ~atieniandthe cornmunit; ' ' I among theories of systems, variation, psychology, and knowl-
edge. A system is described as "a network of interdependent com-
ponents that work together to try to accomplish the aim of the
A THEORETICAL FRAMEWORK FOR IMPROVING system." Systems theory suggests that the success of an organi-
QUALITY OF CARE I N THE HEALTH SYSTEM zation will depend on its ability to integrate and align the various
components that make up its system. Variation occurs in all
This framework recognizes that multiple layers of the health care systems. The application of QI methods can decrease unintended
system influence the ability to improve care for the child and variation. This is important because standardization of care pro-
family: the experience of patients and families (patient and the vides the necessary base in which new approaches can be tested
community); the functioning of small units of care delivery and evaluated more rapidly. In addition, it is essential that those
(microsystems); the functioning of the organizations that house leading improvement efforts acknowledge that making changes
or otherwise support microsystems (macrosystems); and the envi- to established patterns is difficult. It is useful to learn techniques
ronment (policy, payment, regulation) that shapes the behavior, to establish buy-in, overcome resistance, and facilitate helpful
interests, and opportunities of the organizations. Efforts at each interactions among team members. The scientific method of
of the different levels of the health care system and the interac- testing hypotheses is illustrated in the following section.
tions between them can influence the ability to achieve patient
safety and quality of care objectives. THE MODEL FOR IMPROVEMENT. This model contains three fun-
Strategies to improve care must be targeted at all four levels in damental questions that form the basis of improvement science
order to close the gap between current knowledge and practices. (Fig. 2-2). The initial step is to develop the aim, a written state-
It is not surprising that rnulriple studies of strategies used to ment that specifies what measurable improvements the team will
change practice demonstrate that the passive provision of infor- accomplish and in what time frame. Next, measures are selected
mation, as in traditional didactic continuing medical education, that will help the teams assess progress. After considering what
rarely achieves i ~ intended
s goal. Knowledge is essential but not changes
u
can be made to i m ~ r o v ecare. the clinician next must
sufficient to produce behavior change. Successful efforts to determine how to implement and test whether the changes have
improve care recognize that multiple layers of the health care resulted in improvement. This can be done using a framework
I T I L I ~ ~
~\,rc111 ILOI-IC r(1!:~111zr t o ; I C I J ~ L , I\ L
>.C [ [ ~ ~ ~ L I ~ C I I IIII\ I IC I
I ~ \I !. for rapid cycle improvement known as the Plan-Do-Study-Act
Iv llltL,r\ t11~lOll\ l>.l\I.~l 011 < 1 \ \ r \ ~ l 1 1 ~ lo
\ i l l \ l l , l l l l lt,l~-crL~Ll l tt ~l(1LCll- (PDSA, PDCA, or Shewhart) Cycle (Fig. 2-3). Recognizing that
II:II l u i - r ~ L , r \,I[ ,>I1 lt\~l\ of r11t. I~c.11tll L ~ I I . L ,>\ , \ r r m . I ~ Cli1g)rc III,<.I\ not all changes result in improvement, but that all improvement
111 11c ~ ~ f t c c t ~I t~r, .I T IIIirrrvcI1[IoII$ t h ~ o11Ivt t ( ) i ~ l \(rll . ~ ~ I d r ~ \ \ l l i ! : requires change, the cycle begins with a plan and ends with action
I T ~ V V I ~ , I ~ rt+!,ltrLI
\ T ( I I I I L I I I I A I I , I I I L , \ ~ , I \of t l i r I ~ L ~ , I I [~I I~ l r , ty *$t~.r~i. based on the learning from the cycle. This approach has 4 dis-
( ~ L I ~ ~ ~ C I I I I CL J, I- I IN, 111o\[ ~ ~ t t c c ~rr.111\1.1t~d ~ \ ~ l : ~ I I I ~ I I \ ~ . I I I L I ~ I ~ L ~I I - J C - tinct phases for developing a change, testing the change, imple-
L I L Y ~ I I ~ I J I I ~LI I ~ ~ I -~ . .tI ~ ~ I I I I\I K~o p p ( I r r i l n l r l c ~ .Ir.lr11111g~ i ~ l ~ \ ~ 1,1 r1 c.I c i menting it, and then studying its results. A series of these
l c 1 n ~ i r ~ 1 d 1&1)1I . .\ 1C ~1~ I I C . I ~ < C ~ LIII.IIIIICL
I < ~ I I L IIIIC I ~ I - O \ - I \ IoiI ~IIIII L ' I ICI,
~II small-scale tests can build knowledge sequentially and yield
1ti t.l;l[~1.111~ 1ll1~lr111~l1rl1[1(111 ill t h ~ 'I1rd~.(lit' ) ~ t t l ~ I~? t l r O l \ ,111~1 useful information quickly. In the microsystems in which care is
resources). delivered (a newborn nursery, an office practice, a pediatric inten-
Chapter 2 .
Quality and Safety in Health Care for Children .
15

4. {ow will we know that


changes are an
improvement?
Aim

Measures

Ideas
7

practice using special reports from the V O N database, reviewed


.that changes can .,
make that will result in
the ev~dencew ~ t hfaculty experts, and then set measurable
Improvement goals. Each team set ~ t owns aims based on their
an improvement assessment of the evidence and of the tradeoffs lnvolved w ~ t h
changing practice. The teams received quality improvcmenr
(QI) training and ongoing support through conference calls and
Figure 2-2. Model for Improvement. (From Langley GJ: The lmprovement
Guide: A Practical Guide t o Enhanczng Organizational Performance. San
email for a 12 mo period. VON achieved a 37% increase in
Francisco, Jossey-Bass, 1996. 0 1996 by Gerald J. Langley, Kevin M. Nolan,
early surfactant administration for preterm infants, one of the
Thomas W. Nolan, L. Norman, and Lloyd P. Provost. Reprinted with per- largest effects seen in the literature fox changing the behavior of
mission of John Wiley & Sons, Inc.) health professionals and promoting evidence-based practice
(Table 2 - 3 ) .
Performance measurement, collaborat~onamong cl~nicalteams,
sive care unit), a series of PDSA tests linked with simple tracking
and quallty lmprovement support are common elements In suc-
of data for improvement can be helpful in determining whether
cessful lmprovement efforts. Quality measurement and Improve-
a change has resulted in improvement.
ment efforts such as those of V O N are facilitated through the use
The Vermont Oxford Network (VON) has used the Model for
Improvement to make significant improvements in the quality of
of an integrated data system, quality improvement roolkits,
neonatal care. V O N is a voluntary collaboration of health pro-
workshops, and technical assistance. The Vermont Child Heahh
fessionals whose mission is to improve the quality and safety of
Improvement Program (VCHIP) and the California Perinatat
medical care for newborn infants and their families. VON main-
Quality Care Collaborative (CPQCC)are additional examples of
tains a database for very low birthweight infants at its >500
organizational programs that collaborate with multiple health
member hospitals across the United States and in other countries.
care partners to provide quality improvemei~ttraining and data
In an effort to integrate research into daily practice, V O N has
feedback that support improvements in care at a statewide level.
used this database for clinical trials, cohort studies, outcomes
research, and quality improvement collaborative efforts. The CREATING AN ENVIRONMENT THAT REQUIRESAND
network undertook a program to reduce rates of chronic lung SUPPORTS QUALITY IMPROVEMENT
disease in extremely low birthweight infants. Based on evidence
review, expert consensus, and network experience, a series of key Several efforts in the policy arena work to create an environment
changes were identified involving the use of surfactant for pre- that is conducive to quality improvement throughout the health
mature infants. Participating clinical teams assessed their current care system.

CERTIFICATION OF INDIVIDUAL PHYSICIANS AND TRAINING PRO-


GRAMS. Specialty certlficatlon In medicine was once based solely
on individual knowledge (passlng an e x a m ~ n a t ~ o rather
n) than
actual performance in practice. Beyond individuai state require-
ments for continuing medical education, no further evidence of
competency needed to be demonstrated There is signifkant vari-
ation in care, even among board-ceded physicians, indicathg
that medical knowledge is necessary but aue suftkiet~tfor b e
delivery of quality cafe. In response to evolving evidence about
the limited effectiveness of knowledge-based approaches alone h
ensuring the quality of care, the h i c a n Board of Me W Spe-
cialties (ABMS) and its member boards, including the American
Board of Pediatrics (ABP), have creared a lnos continuous
process of recerrification in which physicians d be required w
document performance measurement, praaice improvement, and
systems thinkiig as a part of Mainrerrance of Chr8mrion
(MOC) in addition to periodically ssing a test of kno~leclp.
P"
Of particular relevance is Part IV o MOG of the ABP, the Prac-
tic; Performance component, whkh will require &monstrarion
of the assessment of quality of care and irnp1emmtation of sys-
tematic improvement strategies.
The ABMS actions have built on the competencies for residency
Figure 2-3. The Plan-Do-Study-Act Cycle. (rrom 1,angley GJ: The lmprove- training programs developed by the Accreditation Council for
ment Guide: A Pyactical Guide t o Enhancing Organizational Performance. Graduate Medical Education (ACGME). The ACGME now
San Francisco, Jossey-Bass, 1996. O 1996 by Gerald J. Langley, Kevin M. requires Common Program Requirements that mandate that cer-
Nolan, Thomas W. Nolan, L. Norman, and Lloyd P. Provost. Reprinted with tified residency training programs ensure that residents demon-
permiss~onof John Wiley & Sons, Inc.) strate "practice-based learning and improvement" involving
16 W PART I W The Field of Pediatrics

assimilation of scientific evidence and systems-based practice approach using standardized methods to dialysis treatment. This
(www.acgme.org) in addition to other competencies (knowledge, focus on the systems of care has led to significant reduction in
patient care, communication skills, professionalism). racial disparities.

POLICY AND REGULATORY EFFORTS TO INDUCE IMPROVEMENT


EFFORTS. Public and private organizations have attempted to SAFETY
influence quality of care through policy. In the late 1990s, policy-
makers and payer organizations began to develop programs that Safety is an important dimension of quality, and errors in health
reward high-quality care in an effort to improve quality in the care are a leading cause of death and injury. Three to 4 % of hos-
U.S. health care system. The programs use provider performance pitalized patients are harmed by the care that is supposed to help
measures as quality indicators. These programs are called pay- them. On average, of 100 hospitalized patients, 7 are exposed to
for-performance (P4P). An IOM report has called for "purchas- a serious medication error that harms or could harm them. It is
ing strategies that encourage the adoption of best practices estimated that between 44,000 and 98,000 patients of all ages
-
through the release of ~ u b l i cdomain com~arativeaualitv data
and the provision of financial and other rewards to achieve high
1 J
within the USA die in hos~italseach vear as a result of errors in

levels of quality." Although there is little research to date regard-


ing the effectiveness of reward programs on quality, supporters
of P4P Droerams
" . believe that these incentive efforts will lead to
significant improvements in the quality of care. \ \ s r e ~ nwltli d ~ t t u w.~csoulir.~l~il~t!.;
<. .
a i~11tul.cchi artribtrt~ngerrors
Other organizations have attempted to provide practices with t o I I ~ L ~ II J\ L I ~~I I, ~
h i, i o\i.rIook\
h prohlem~3riisybrerns; lack ot all?-
guidance for effective measurement and reporting of quality data. giance between physicians and hospitals, which detracts from
The National Quality Forum (NQF) was created in 1999 with the patient-centered practices; and reimbursement policies that fre-
intent of improving American health care through the endorse- quently discourage safety measures. The ABMS has stated, "The
ment of consensus-based national standards for measurement and ability to assess and systematically improve the safety of medical
public reporting of health care performance data that provide ~ ~ r ~ cI \t .in
~ c ees \ ~ r ~ r 1~ . O~ 1~ I Ct [ c\..vry
I ~ C ' ~o ~ C \ c ~ . ~ - r ~ tptly5lci~ll."
icJ
meaningful information about whether care meets the six IOM -,Emin ailim'8Wkra FL*Mc p ~ d r n l ~ o l ~cl;rta
~gii
dimensions of quality (see Table 2-1). The congressionally man- ,~rrnssilnhler~firdinamtdksti-rn trrcitt In rlw p r d i n r r ~ c\t.rrlllg.
dated National Healthcare Quality and Disparities Report, pub- . I I I I ~ O L I ~ I I \ \ ' o ( ~ d \; i r i ~ li ~ J l c ~ g u feo\ t ~ n drli.qr rLttrs 11t p r w r r i [ ; ~ I ~ l r
lished annually by the Agency for Healthcare Research and ~ J \ c r \ c v e ~ ~111 t \ 1 1 ~ ( 1 1 i ~Lt e \~ 1nt;111t\
~ ~ dwere \).i<":,, :imI 111 ihil-
Quality, includes a broad set of performance and outcome indi- ~ i r c r ~12 1 I- o t ,isc (!.22".s2.rllc j ~ , r t v 1 1 1 ~ t1i1~ rpecii;qlrii ~ n p a r ~ e ~ i r
cators to monitor the nation's progress toward improved health mc~llL,tlL I I I I ~ \ I \ \ulrct<lntl.~lTI115 111.1\ 1 1 L~~ L I ~in. pdrr. t o the facr
care quality. I t 1 . 1 ~ i h ~ l J r t nI i , ~ t cu l i ~ q u cL I I ~ I L J I ciprrlrlicC\ rh.1~.lie pronr to
t r r o r T h r s t unlqut rlak factor\ (11 s , ~ t t>curc. ~ r ~ r l ~ r-'4 Ll's," 'Ire:
QUALITY IMPROVEMENT AS A MEANS ~ i t ~ c l o p n ~ c n~Ii.~rlyc.
t~il ~ I r p c n r l ~ * InU ~I radrrl~\, cl~tkcrcr~t dise,i\r
OF ADDRESSING DISPARITIES I N CARE epidemiology, and demographic character~stics.Developmental
change might refer to the unique susceptib~l~ty of neonates to
infections or the need for weight-based doslng wlth growth. Chil-
Advances in quality can help to minimize racial, ethnic, and
socioeconomic disparities in health outcomes that result, at least dren's dependence on adults also puts them at heightened risk for
experiencing medlcal errors because ch~ldrendo not usually
partially, from differential quality of care. As a result, the quality
curve not only shifts to the right (denoting improvement), but it manage thelr own treatments, have the ins~ghtto questlon thelr
own care, or provlde thelr own med~calhlstory. D~fferentdlsease
also narrows, demonstrating a reduction in the variation of out-
comes among different populations (see Fig. 2-1). An excellent
epidemiology refers to the unique ~llnessesand medlcal needs that
example of this is the End-Stage Renal Disease Network. The
management of end-stage renal disease has shown significant
improvement in quality of care (effectiveness of dialysis; Fig. 2-
4) with the use of a national database and a collaborative
r h r ~p o j ~ u l . ~ t i c ~ n .
Adverse drug events (ADEs) may occur in pediatric patients at
a similar rate as in adult patients; the potential ADE rate may be
Average URR - Oct-Dec '93
Oct-Dec '94
three times higher in children. (A potential ADE is one that is
30 1993: 62.7% intercepted before causing harm.) Most potential ADEs occurred
1994: 63.8% - Oct-Dec '95 at the stage of drug ordering and involved incorrect dosing, anti-
1995: 65.5% Oct-Dec '96

a,
-, 25 - 1996: 66.8%
1997: 68.0°/n
- Oct-Dec '97 infective drugs, and intravenous medications. In an ambulatory
setting, 13% percent of prescriptions for children had potential
medication errors. These errors were more common for infants
-g-
0
20
.IIIJrocldlrr-s. i l l ~ l d r r n~ ~ b r a i n l ~r ~i ~ :~ ~ lpt r~~ ps li rt i l ~ t ~aro ~lht.
\.inir rirnr. and prexcl-rprions f o r an,~Igr.;~is/n;lri~t~c\.
~\
C ) c s ~ ~ thr
tc
g c l ~ . ~ I l ~ ~.~IILI
ngt~ i ~\ n p o r t . ~ ~1 l1 1i rx c u r . l r s rncdic.ar~c,nJo\irig it] c h ~ l -
0 I
LII-en.rcshr~~)log!cotrn,ar-r dc ~ e cno1 :il\.~.1ysaifcirer;~ix\~irsspec tic
t t ~i h ~ l ~ l r5uchr ~ ~ ;I\
, prrl1.7ri-ic. ~ l u \ i n si a l i ~ ~ l , j r ~2nd l > ~agc-hasrd
~s
no~-rn.llr;iti#r\. 11 I \ r c r ~ r n a t < .1h.11 ~ i rnparlrnr norirnrd~i.~tirrn crr4)r:.
~ r ~ \ , c ~in^
l \ ihrlJrrrl rcs~lltIn o i c r S 1 btlllon 117 r c c o ~ u ~ l i ; l t iosr'r ~~tn
per year and are associated with significant and substantial
lilirra\c.s In Irnprll o t \~.ir..chnrpz5. arrci tn-tio.;p~tal ~lc',itlir.
Key l s s ~ i u sin Patierli S i ~ l c ~Muhlng
y care satrr reclulrt.\ rhi. iden-
<50% 50-54% 55-59%60-64%65-69% 70-74%75-79% 80%
rltis,ll~olr,lir~icontrol o t 1liing.i rhat io111d causr harni tu p ~ t i c n t s .
Urea Reduction Ratio (URR) kc-er.31 kr! corliepts rc:g,~rd~r~g parlelit q ; i i ~ t y.Ire r~i11i171arl~eci
~n
Fiei~re2- Improving renal function. An example from the End-Stage Renal ilir tollon-111gs c i r i ~ ~ .~I I r~ Ls Iarc , l \ ~ i l a h l t in
. sr~rrlcr~lurn
overvlctvs
Disease registry. at www.patientsafety.gov, www.npsf.org, and www.va.gov.
Chapter 2 . Quality and Safety in Health Care for Children . 17

SYSTEMS APPROACH. One of the most significant changes result- perform its intended function in the required time under com-
ing from the emphasis on patient safety is the recognition that monly occurring conditions (i.e., providing intended care on a
the majority of health care errors result from faults intrinsic to consistent basis). Most health care organizations currently
the processes by which health care is delivered, rather than indi- 1 1 1 x t t mi a Level 1 reliability I\ hlsh mc-ans thar processes a r r prr-
vidual mistakes. This systems approach compels organizations to t o r m c ~ i\ v ~ t horll! ,In 80-90"0 5uiirss rare. 'To achieve Level 2
respond to adverse events not by blaming individuals, but rather ~xrforniance( 5 C I'.~ilurrs/lUO c~pportlrllltlesl. PI.OCCCS rnu(it be
by endeavoring to improve the conditions under which individ- i r r t ~ ~ t i t r o r rrl't'srgrrcLi t h a n d concrprs 1,ascd o n the pri~l-
~ ~ l l ~ ~ ~ v ~ torlls
uals work. An error is viewed as a symptom of trouble in a <~iilc\o f h u r ~ ~ atacrori n ruglnecrlng. Prrtc?rln~ncca t Level 3 ( 5 5
process that offers an opportunity for improvement and the t L ~ ~ l \ ~ r ~ * i\ ~! l~~i)~~>) t( >l r t i ~ rcquIrc\
~ i i r ~ t s I , u ell-dcsig~~cd
<\>tcrt~\\,I[II
potential to implement safeguards. It,\\ \.,lrlntlorl and cl:joprratlvc. rclution\h~psa r d a stste ot w h ~ r
11.1, Iici-n i a l l r J "rnir~dtulnrs~,"~vherc~.Ittr.llr,r~n is p a ~ J t o
DEVELOPING A CULTURE OF SAFETY. The biggest challenge in proic\\c\. struirure. and thrrr r c l a r ~ t > n ~ ht o~ prrurcomcr. For
making the health system safer is changing the culture from one e\-,~rr~plc. C.incinriat~ Ch~ldrc-n'sliuipiral \)lrcfiial C:~nrcr used
of treating errors as personal failures to one of treating errors as ~ t ~ and I-hr blodrl ii)r Itnpr~ivrn~r.nr
r r l ~ . ~ l l i lcclcnir ro rnstitutr a
opportunities to improve the system. Organizations need to foster \e~~t~li~rtir-.~\\o~.~L~re~i plicilrnor~1a (VAll! protocul t t i i ~ t 113s Id t t )
a culture of learning in which each individual will feel account- .1r1 S-",, rcdl~itiorlrn il:\Ps per I o o l l ver~ril,ltorddys itroni a huial
able for ensuring a safe and quality program, communication is year average of 7.5 to an average of only 0.95 for the year ending
open, and teamwork is valued. Reporting of errors should be \e t c d u LUU6j.
valued, reports of adverse events handled confidentially, and
those who report errors protected from discovery. In addition,
&IYGOENC SI$*SWeS. The J o i n t
Commission on Accreditation of Healthcare Organizations
developing a culture of learning involves the compassionate and (JCAHO) includes safety measures in their requirements and the
appropriate disclosure of system failures and medical errors to ACGME has instituted hour limitations in residency training to
patients and families. minimize errors related to fatigue. Future efforts to make care
Communication. Good communication among the health care safer for children will involve a focus on appropriate information
team is essential for patient safety. Health care involves the safe rrchnolo#>-. 1nilucl1113thc dcvelrrprnel~tand 11nplr1nrnr,1rioli of'
transfer of responsibility for patient care and the transfer of ~ ~ l c c t r t , rnrdrcal
n~i rccc~rtlsappropr1;ltc klr uhr i11 pcdi;lrric> (c.g..
patient information. Poor communication or miscommunication r h r ~ r l ~ i ~ l sot~ opeillC~[rli
n ~ t ~ i ) t ~ norln,~!
timing i ~ ~ l ~ l ~ l . .agr--basrtl ~.
creates the opportunity for incorrect or incomplete transfer of r-,~ngr\,~ l > r l i r yt o ealcularr ;lgr In ~nrrrvalsIcsc t h a n a ?car. and
vital information during the transfer of responsibility for patient .~ciole\ienrconfiJrrlr1'111ryissursi. Eihiienr Ji.;srrn~nariunot ~ntol.-
care from one provider to another, thus placing the patient at risk rnJtlon rcg~irJingIwsr praitlrrs mii provtclrng s;lfer!- tramins to
for serious medical error. The potential for harm is increased IIC,IIIII c,lrr pro1rss1o11als3re .ll?rc, ncrdcd. C:ontir~ued.1nJ iigrl~ti-
when the health care team and the patient do not share a native c.lnr ctfcnrts a r e reclurrc~if to cn\ure a sate hhealth care r!-srem t o r
language. Errors in medical interpretation are common, with ;Ii~lJrcll. Ir.ltcty 111~1511~ vlewed, however. as one somponcnt ot
omissions being the most frequent. Ad hoc interpreters are sig- .I I ~ r i ~ ~ ~ sonirlirtmrnr
dcr t o pri)v~ct~llgolrr~rnalhralrll cr~rctor
nificantly more likely to commit errors with harmful clinical con- children.
sequences than are hospital interpreters.
Teamwork and Authority Gradients. Ensuring a systems approach
to health care safety involves a paradigm shift. Health care has Brilli RJ, Wells D, Shaw J: Implementation of a pediatric specific VAP bundle
tended to be a hierarchical endeavor, with physicians in leader- results in near elimination of ventilator-associated pneumonia at a tertiary
ship roles that allowed significant amounts of autonomy. This pediatric ICU. Chest. 2006;130:138S.
authority gradient can predispose to communication failures: Chassin MR, Galvin RW: The urgent need to improve health care quality:
junior team members may be hesitant to speak up and senior Institute of Medicine National Roundtable on Health Care Quality. J A M A
members may resist feedback. A medical student or nursing assis- 1998;280:1000-1005.
tant may be hesitant to inform an attending physician of a poten- Donabedian A: Evaluating the quality of medical care. Milbank Q
tial error. In contrast, in a culture of safety, team members with 1966;44:166-203.
different positions of authority must interact to facilitate optimal Flores G, Laws MB, Mayo SJ, et at: Errors in medical interpretation and their
potential clinical consequences in pediatric encounters. Pediatrics
patient care; all are empowered to voice a safety concern. The 2003;111:6-14.
composition of the teams may vary day to day because of shift- Forrest CF, Shipman SA, Dougherty D, et al: Outcomes research in pedi-
ing schedules. Senior leaders must be able to engender trust atric settings: Recent trends and future directions. Pediatrics 2003;lll:
rapidly among team members, accept that human error is 171-178.
inevitable, and encourage behaviors that prevent or mitigate the Horbar JD, Carpenter JH, Buzas J, et al: Collaborative quality improvement
harm that results from errors. to promote evidence based surfactant for preterm infants: A cluster ran-
Human Factors Engineering (HFE). This is a discipline concerned domised trial. Br Med J 2004;329:1004.
with the design of tools, machines, and systems that takes into Institute of Medicine: Leadership by Example: Coordinating Government
account human capabilities, limitations, and characteristics. It Roles in Improving Healthcare Quality. Washington, DC, National
Academy Press, 2002.
builds on ergonomics and utilizes what is known about human Institute of Medicine Committee on Quality of Health Care in America: Cross-
performance and system interaction. HFE can play an important ing the Quality Chasm: A New Health System for the 21st Century. Wash-
role in the optimal design of equipment, the development of effec- ington, DC, National Academy Press, 2001.
tive processes, monitoring for unintended consequences, and the Institute of Medicine Committee on Quality of Health Care in America: To
planning for and introduction of new technologies. HFE tech- Err Is Human: Building a Safer Health System. Washington, DC, National
niques used to identify hazards or areas for improving safety can Academy Press, 1999.
be proactive (addressing complex areas of health care before Kaushal R, Bates DW, Landrigan C, et al: Medication errors and adverse drug
implementing an intervention) o r reactive (reviewing reports of events in pediatric inpatients. J A M A 2001;285:2114-2120.
"close calls" or injuries). An example of an application of HFE King, WJ, Paice N, Rangrej J, et al: The effect of computerized physician order
entry on medication errors and adverse drug events in pediatric inpatients.
in health care is development and implementation of computer- Pediatrics 2003;112:506-509.
ized physician order entry, which has been shown to decrease the Leape LL, Berwick DM: Five years after To Err Is Human: What have we
rate of medication errors in pediatric inpatient settings. learned? J A M A 2005;293:2384-2390.
Reliability. Reliability in health care is defined as the measur- Leatherman S, McCarthy D: Quality of Care for Children and Adolescents:
able capability of a process, procedure, or health service to A Chartbook. Commonwealth Fund, 2004. www.cmwf.org.
18 . PART I 8 The Field of Pediatrics

Lohr KN (ed): Medicare: A Strategy for Quality Assurance, vol I . Washing- decision-making in health care is thought to involve the ability
ton, DC: Institute of Medicine, National Academy Press, 1990. to understand and communicate, to reason and deliberate, and
Longo DR, Hewett JE, Ge B, Schubert S: The long road to patient safety. to analyze conflicting elements of a decision using a set of per-
J A M A 2005;294:2858-2865. sonal values. The age at which a competent patient may legally
Lurie N: Health disparities-less talk, more action. N Engl J Med
2005;353:727-729.
exercise voluntary and informed consent for medical care varies
Marmot M: Social determinants of health inequalities. Lancet from state to state and may be limited to specific conditions (sex-
2005;365:1099-1104. ually transmitted infections, family planning, drug or alcohol
Mazmanian PE, Davis DA: Continuing medical education and the physician abuse).
as a learner: Guide to the evidence. J A M A 2002;288:1057-1060 In contrast to decisions about one's own care, a parent's right
Miller MR, Elixhauser A, Zhan C: Patient safety events during pediatric hos- to direct a child's medical care is more limited. It is constrained
pitalizations. Pediatrics 2003;111:1358-1366. 1 ~ 1 1 t1 h1) rht. i h ~ l i l ' sIwsr 111rercctnnd rhc ~ l l i f r p t . ~ i d c 1bli9atrc111
~lr
Miller MR, Zhan C: Pediatric patient safety in hospitals: A national picture # i t ~ I I I ~ ~ C . I . I I ) L I r r i Ail in t h c child's bcir ir~rrre\t.r v r n if rhr5 places
in 2000. Pedzatrics 2004;113:1741-1746. rhcm In i o i ~ t l ~ with i t a ]).4rr!li. 'l'hc. ~ . o r l i r p cli
t p~r(.lltillPrr1111i-
Papadakis MA, Teherani A, Banach MA, et al: Disciplinary action by medical
boards and prior behavior in medical school. N Engl J M e d
,lor1 ~ r , ~ r h et rh a n i o n s r n r ) rctlccrb this shared tlciis1o11-11~~liir1~

2005;353:2673-2682. 11iv01ve~I111 p t J J ~ : ~ t r ili~..3lrl1


c c ~ i r e .111 ~ ~ give11
i y insr.111ce. the ~ 1 r c 1 -
Psaty BM, Burke SP: Inst~tuteof medicine on drug safety. N Engl J M e d sion of what is or is not in a child's best interest may be difficult,
2006;355:1753-1755 especially given the diverse views of acceptable child rearing and
Scott JT, Rundall TG, Vogt TM, Hsu J: Kaiser Permanente's experience of child welfare. Parents are (and should be) granted wide discre-
implementing an electronic medical record: A qualitative study. Br M e d J tion in raising their children. Nevertheless, in cases involving a
2005;331:1313-1316. substantial risk of harm, the moral focus should be on what is
Sehgal AR: Impact of quality improvement efforts on race and sex disparities best for the child, not on a parental right to decide.
in hemodialysis. J A M A 2003;289:996-1000. Respect for children must account for both a child's vulnera-
Simpson LA, Dougherty D: Measuring the quality of children's health care: A
prerequisite to action. Pedzatrics 2004;113:185-198.
bility and developing capacity. Thus, this respect encompasses
Trivedi AN, Zaslavsky AM, Schneider EC, et al: Trends in the quality of care both the protective role of parental permission and the develop-
and racial disparities in medicare managed care. N Engl J M e d mental role of child assent (the child's affirmative agreement). At
2005;353:692-700. times, respect for a child requires overriding a child's dissent
US Department of Health & Human Services: Highlights from the when a proposed intervention is essential to his or her welfare.
1998 ESRD Core Indicators Project, September 1998. Available at Otherwise, assent should be obtained and dissent honored. In
http://www.cms.hhs.gov/esrd/4r.pdf. seeking younger children's assent, a clinician should help them
Woods D, Thomas E, Holl J, et al: Adverse events and preventable adverse understand their condition, tell them what they can expect, assess
events in children. Pediatrics 2005;115;1-155. their understanding and whether they feel pressured to assent,
Wright AA, Katz IT: Bar coding for patient safety N Engl J M e d
2005;353:329-331.
and solicit their willingness to participate. Older children or ado-
lescents may have the cognitive and emotional capacity to fully
p ~ r ~ ~ c 111 ~ pIir,ilth
x r <;qrr d e i ~ \ ~ o r l rs \, p r i ~ [I) a ~t the! ,Ire lii-ing
\ \ ~ r l i iIiror11L-~ l l ~ i c \ sIt. i i ~ . 111e La~iiile\ccnt\lio111J lv p r o v ~ ~ l c ~ i
L~

11 1iI1 t h s~~ l n l c11itt1rr71;1r1o11 J> ~ O L Ibe I Jg i \ , t ' ~tn


i art a ~ l r ~pnrlcnr.
lr
' I IIC . ~ d o l r c i r . n t ' \p a r c l i r \ r ~ l l r e ~ n a l n \In .i jirr~ilirig .11111 1-rotcctivc
r o l ~ .I'hc p r n i r s \ k ~ ct t ~ m n l u n l c , ~ r l r r.1r1d
n ~ i e g o t l ~ r i owill
n hr Inrrrc
complex should disagreement arise between the parent and ado-
lescent (see the later section "Adolescent Health Care").

TREATMENT OF CRITICALLY ILL CHILDREN


The proper scope of parental decision-making is bounded by the Most children who are critically ill recover and are able to return
concept of a child's best interest and by the emerging desire and to an acceptable quality of life. Some children either respond
capacity for autonomy or self-determination of an older child or partially or fail to respond to life-sustaining medical treatment
,ILI(IIL,<~L I IIC
, I I ~! .) c ~ l ~ ~ lLrI rI ~ I L I . ~ ~
I Ic ~ 1 , oII.I\ . I I ~I I ~ L ~ L ~ > L , I ~ Lp~rCoI-I I
(LSMT), progressing toward death over a time span ranging from
~ ~ \ , I I I I Ia. Ii Il ~ l ~ ~ ~ [ ( iI <iL-[
r i ~111 ~ .I~ ci l i ~ l ~ i .' ,. I w t ~ n t c r c \ t , ' .L I ~ L I , ~ r e . I r -
minutes to years. Most children who die in an intensive care unit
I I I tlir,
~ ~ ~ o \ \ I I ~r Ib tI iI t~~!l ~ t l l .1111(11ig i[ L 1 1 1 I J . p.lrrrir. .rrid c l ~ r i ~ c ! , l n . (ICU) do so after a decision has been made to either limit or with-
1.11~. ~ p ~ i r o .t11 l ~ L , ~ I I I C ~ I I%,LIL~\
i ~ tlic I r11.1r ,1r1\e I I I ! ~ L - L ~ I ~ I [ I . IprLiLtiLK
L
draw (forgo) some form of LSMT. Under these circumstances, a
11111,tIIILILIJ~. r t \ l l e i t t o r l y o ~ h.I p . l r ~ l i r r' ~ e \ p o n \ ~ h ~ I t~orr \ [IICIltt.
number of questions arise. Should one initiate or continue LSMT?
.11id licL~l[li o t LIIIIJ .in11 , j cIIIILI'\ L I ~ v L ~ I ~ ~~ .~ I I~ I ~ I I ~L -,IIILI
I ~ ! .ILI~I~II-
How does one arrive at this decision? What treatments should be
, ) I n \ . 1,urrhrr i c r r ~ l p l c ~1.; ~ t~Ltdecl
\ I)! rhc v,iriIrly ~ c i c ~ . icl .~ ~ l r ~ ~ r . . i lprovided , as part of palliative care? Is there any difference between
, I I ~~~ I I ~ I < )\ IL C ~ \\ \ \ 1 1 t TIIC role lit ~ . I I T I I \p1rerlt.11 \. Lil~rl~or~t>.
starting and stopping a medical intervention? What about spe-
;illprq>rlL1[c IIIL,~II~ t t)t rLLI \~ I L I ~ ~ I I I I(II CI I~I I I L I ~ 1 s t lii.ilorlr\~..IIIL!
cific interventions such as cardiopulmonary resuscitation or arti-
, I ~ ~ Y I - I I . I It-I ~~ i l ~ p r o . i L ! i rro \ l ~ c ~ ~ cl .r~hr r . ficially provided hydration and nutrition? Should newborn
infants and older children be treated differently when consider-
INFORMED CONSENT, PARENTAL PERMISSION, ing LSMT?
AND CHILD ASSENT
TRANSiTIONING FROM "CURE" TO "CARE." The provision of LSMT
A competent adult patient has the right to decide, after consul- assumes that the burden of treatment is justified by the antici-
tation with a physician, which medical interventions he or she pated benefit of returning to or sustaining an acceptable quality
1i.111o r \ \ - I \ \mrt , I L L L ~ ~T111\ ~ . 1 . 1 ~ 1oi tt \~Jf-Jeternlin3tio1lo r anton- of life. As the anticipated quality of the outcome deteriorates or
otnyJ I~.i\cd< ) t ipcrvrr1.11 ~ ~ L . I ~ J ~ C I .11i~i - C, ~ ~ L Y ~ ~ I. ILI ! iIit
I L C \ \ ' L ~ l ~I \ ~I e becomes increasingly unlikely, or as the burden of treatment
C I ( I L ~ I . I I ~ C ( i f 1o1111i[,jr>. i ~ i J I I I ~ ~ ~ I I I coliicilr, C L ~ l l i ~~ ~ l o c t r ~ ~ i ~ becomes
,. intolerable, the family and the health care team ask
l t ~ s i v e \ - ~ lIIJL - . I I I I I I ~ L . L ! cltr~,ci, 1 ~ ~ 1 i i , a t 1 110~ 1il11lJrc1i
1 .IIIL\ ~ ~ 1 1 i l e \ - whether continued LSMT makes sense. Answering this question
<CIIt, \$ I111 l<lCL lilt, Ll~cl~lllll;il <&Ip;lclryo r I c ~ < I I c1l1po~vt~r1llCll~ to is difficult, involving a range of possible outcomes, complex esti-
give 111ror111e~l C I > I I W I I I 10 11ic~td1~;11 t,<1rt. l - l i ~L , . J ~ ~ I tCo Ir ~ ill\ttirrncii mates of probabilities, differing values of each outcome, and
Chapter 3 Ethics in Pediatric Care rn 19

dealing with uncertainty and hope. Medical technology and other tlon, withholding treatment out of concern that the withdrawal
treatments should only be used when the benefits for the child of that same treatment in the future would be more difficult risks
outweigh the burdens, especially for children living with life- undemeating some children who would, in fact, respond favor-
threatening or terminal conditions. ably to that treatrnem. The withdrawal of LSMT rway be psy-
The concept of futility has been invoked in support of the uni- chologically mare stressful than withholding LSMT,and may add
lateral forgoing of LSMT by health care professionals over the complexity as the moral values associat~dwith beatmenr of any
objections of patients and family. Although it seems self-evident given child may shift over dme. This alleged sysnm~ttybmw
that clinicians should not provide futile (or useless) interventions, thc decision ro withhold or to withdraw LSMT assumes that fhe
the application of this principle is problematic if used to justify technology itaelf is morally neutral aad that other changes that
unilateral professional action based on values that are not shared may occur over time are not morally reievant. BDrh assumptions
by the affected patient or family. The concept of futility should may not be appropriate, especially when transin'onhg to tech-
be reserved for those interventions that will not, in fact, achieve nologies such as a trache&tomy or gastrosromy tube.
a given physiologic outcome. The appeal to futility should not be The decision not to attempt cardiopulmwary resuscitation is
used to short-circuit the collaborative process by which medical often the initial focus of d~scussionwith oarents of children living
interventions are seen to be disproportionately burdensome. with lifethreatening or terminal conditiins. Obtaining a "do no;
Effective communication empowers parents and children to be attempt resusciration" (DNAR) order may become a symbol of
involved in decisions about their medical care. Approaching a a clin~cian'ssuccess at neaatiatinp: limits tb LSMT wit6 a cbild's
child's parents to initiate a discussion about forgoing LSMT can parents and eclipse other ~nmn&%ons that should be considered
be difficult. A reasonable starting point is to explore a parent's in providing for a child's comfort. Clinicians may assume inap
hopes, fears, and expectations about possible outcomes; the antic- propriately-that a DNAR order reflects a desire not to prsue
ipated burden of treatment in attempting to achieve an accept- other interventions. The decision for a DNAR order does not
able outcome; and the degree of uncertainty in predicting a child's imply a decision to withhold or withdraw other aspects of pro-
response to treatment. Parents often prefer to hear difficult infor- viding medical treatment, such as oxygen, suctionin& pain med-
mation from a familiar clinician who knows the family and can ications, and so forth. The value of specific resuscitative
communicate truthfully, clearly, and compassionately. interventions may vary depending on the patiem's clinical condi-
The disclosure of "bad news" such as a life-altering diagnosis tion and anticipated outcome. Thus, DNAR orders should
or life-threatening complication is often poorly communicated. address separately the provision of mechanical ventilation with
Parents and children may perceive a clinician to be uncaring and or without endotracheal intubation, the use of cardiac medica-
insensitive, resulting in emotional distress. Insufficient training, tions, chest compressions, and cardioversion. In addit~on, a
lack of experience, and feelings of inadequacy about communi- DNAR decision IS not ~rrevocable. Cllnic~ansmay assume that
cating with parents and children over the transition to palliative the absence of a DNAR order obl~gatesthem to perform a pro-
care and other end-of-life issues may distress clinicians and affect longed resuscltatlon. If the futility of resuscitative efforts is based
the quality of care. Clinicians who feel less competent may dis- on a lack of physiologic response, a phys~c~an should tailor resus-
tance themselves emotionally in distressing situations. Inadequate cltative efforts to a child's clinical condition.
support for clinicians caring for dying children can lead to depres- Advance Directives. A DNAR order is a speclfic form of a more
sion, emotional withdrawal, and other symptoms. general advance directive [AD}, which allows patients and/or
appropriate surrogates to designate the desired medical interven-
LIFE-SUSTAINING MEDICAL TREATMENT OR PALLIATIVE CARE? A tions under applicable circumstances. A DNA3 o d e r should be
rigid distinction between LSMT and palliative care may be diffi- part of a comprehensive plan of care that is periodically reviewed
cult to draw in any given instance, and their integration is often and that should be respected in all aspects of a child's care, includ-
desirable (see Chapter 40). LSMT can be broadly defined as any ing schooling. The extension of DNAR orders for chiIdren to the
intervention that may prolong the life of a patient or alter sub- out-of-hospital setting can be an important component of pro-
stantially the expected progression toward death. Examples of viding comprehensive care. Mechanisms and laws should be in
LSMT include cardiopulmonary resuscitation, organ transplan- place for DNAR orders to be respected in schools and the pre-
tation, ventilator therapy, dialysis, and treatment with vasoactive hospital emergency medical system.
medications, or more mundane interventions such as antibiotics, The 1991 federal Patient Self-Determination Act requires that
chemotherapy, and artificially provided nutrition and hydration. health care inst~tutionsask adult (>I8yr) patlents whether they
Palliative care interventions focus on the relief of symptoms and have completed an AD and, if not, inform them of their tight to
conditions that may detract from a child's (and family's) quality do so. Many states have implemented a "prehospital AD" by
of life regardless of the impact on a child's underlying disease which adults m y indicate their desire not .to be resuscitmd by
process (see Chapter 40). The control of pain and other symp- unergenq persorind. The use of an AD in pediatrics has gener-
toms, as well as concern for the psychologic or spiritual prob- ally been limited to inpatient setrings for at least two reasons: (1)
lems associated with life-threatening or terminal disease, are the availability of parents and (2) the iack of a smndardized
usually considered palliative and are often appropriate during process to facilitate the identification, validation, and interprim-
LSMT. Certain LSMT may also be appropriate in the palliative tion of an outpatient AD. Someinstitutions have established local
management of the dying child. policies and procedures by which an appropriately executed out-
patient AD can he honored upon a child's arrival In h e emer-
WITHHOLDING AND WITHDRAWING LIFE-SUSTAINING TREATMENT. gency department. Key features include a standardized format,
A palliative care plan involves the assessment of available diag- attending physician involvement, educational programming, and
nostic and therapeutic interventions based on the goal of improv- administration by the institution's palliative care service.
ing a child's quality of life while living with a life-threatening or Although advocated by some, an AD has not been used for de-
terminal disease. Some interventions that are currently being pro- livery room resuscitation given the uncertainty in predictiag an
vided may be withdrawn. Other interventions that are not being infant's postnatal prognosis based on prenatal inbrmasi~nexcept
provided may be withheld. Although the prevailing view is that under extreme circumstances. An adolescent with a chronic
there is no moral distinction between withholding or withdraw- andlor life-hreatening condition should be supported in dwel-
ing interventions that are not medically indicated, the uncertainty oping an AD as part of a camprehensive plan for end-of-life care.
inherent in predicting a child's response to treatment suggests that .rrilki.l d One of the more diffictrlt issue
withdrawing treatment based on a child's failure to respond is in withholding or withdrawing LSMT is the provisfon of attifi-
morally preferable to withholding that same treatment. In addi- cia1 hydration and nutrition. Any person sufficiently dependent
20 rn PART I he Field of Pediatrics

on the care of others will die as a result of not receiving hydra- atricians stated that they considered their duty was not to serve
tion and nutrition. Some contend that the artificiality of some the interests of their patient but rather to serve the interests of
methods of providing hydration and nutrition (such as the use of the family. These problems were compounded by the fact that
a gastrostomy tube or intravenous hyperalimentation) indicates decisions were often based on erroneous medical assumptions,
that they may be withheld or withdrawn as with any LSMT. including inappropriately pessimistic prognoses about quality of
Another argument is that nutrition and hydration are not in a life.
particular child's best interest regardless of the method of admin- As a consequence of concern about this issue in the United
istration. Some states require "clear and convincing evidence" of States, regulations were eventually promulgated under the
a patient's prior wishes in order to withdraw such LSMT from authority of a federal child abuse law that prohibited withhold-
patients who are either incompetent or in a permanent vegetative ing medically beneficial treatment from disabled infants except
state. This "substituted judgment" is not possible in young chil- under certain conditions. These conditions are permanent uncon-
dren or in patients who became incompetent before expressing sciousness, "futile" treatment, and "virtually futile" treatment
such wishes. Although there are legal cases that have allowed the that imposes excessive burdens on an infant. This rule seemed to
~VIIIIJY~II . I I - ~ I ~ ~ .li~l1r1tlori
I.I~ .IIIL~ I i \ ~ l r . ~ [ ll>.~\cJ~ ) ~ i o n '1 ~ I I I ~ I I I ' ~ disqualify one of the most common justifications for forgoing
'Al~~ ,,~
IIILL*I-C,I\." 1I1c r ~ ~ l ~'1r1.c- i ~X~IICI-.III~
\ I n r c g L ~ r Jt o c i ~ l ~ ~ LSMTl [ in children, namely, the likelihood that continued biologic
existence would not serve the patients' interests precisely because
the child would be so disabled that the burden of treatment would
be greater than the benefit. One unintended consequence of this
rule was an apparent shift from undertreatment to widespread
I 111pllcanons. overtreatment, defined as life-prolonging treatment that, in the
Causing Death? The declslon to w~thholdor wlthdraw LSMT opinion of the physician, does not serve the interests of the child.
does not necessarily lmply an Intent or cho~ceto hasten a child's The regulations address state eligibility for federal child abuse
LIL.ITII 0 1 1 L.III ~ L l ~ 1( 1~1 ~ti , ~ ~ \\L~IIIICJ ~ I I ~
~I I ~ K
\~1tl1011r L~~I)o,- funding and, absent the incorporation of similar language in state
statutes, do not dictate the proper scope of medical interventions.
A subsequent case involving an infant with spina bifida and other
abnormalities upheld the right of a parent to decide to forgo
LSMT for their child. The application of these federal (and
I,L.IIL-! 6 1 1 ~.IIII. ~ I I L ~. ~ ~ I ~ ~ I I I Oi ~I Il i J ~111e\c
.r i ~ r ~ ~ ~ ~ i I~\ \ t11ior.11
<I ~ ~ ~ i i related e b state) regulations (referred to as "Baby Doe" rules) to
good of such magnitude that the secondary effect of hastening parental decisions about the provision of LSMT to critically ill
death is an acceptable (albeit unintended) consequence (see newborns and infants is incompatible with compassionate end-
Chapter 40). Two key features of this so-called "doctrine of of-life care based on the best interests of the individual child.
double effect" (DDE) are worth noting: (1) the unintended
outcome (i.e., death) should not be the means of achieving the
intended outcome (relief of pain); and (2) intentionality is not a DECLARING DEATH AND ORGAN DONATION
psychologic state, but an objective feature of the act itself (choice
of medication, dose, timing, route of administration). The DDE Organ donation can occur after a patient is declared dead based
provides a moral framework for clinicians who desire to provide on either irreversible cessation of neurologic function of the brain
compassionate end-of-life care without intending or causing the and brainstem ("brain death") or a predetermined period of
death of their patients. cardiac asystole ("non-heart-beating donor" or NHBD) [see
If a decision has been made that continued survival is not in a Chapter 67.11. The request for organ donation should be sepa-
patient's best interest, it would seem irrelevant to some clinicians rated from the clinical discussion of either brain death or with-
\ \ l i ~ , r l 11c ~ ~ 01-, ~ -IIV L I I Ll i~ v tq)rg0111g l.\>\l I 111- ~IIL. . I L ~ I ~ I I I ~ I ~ ~ ~ ~ I ~ I ~ I I drawal of LSMT. Although parents and other family members

r)t .I ,11.11g. ~ [ ~ J L -r lLl c- L .:JIT~IIII\I~.III~


~. o t .I Ietli.ll d r u g r n ~ g h tlie may ask questions of the clinicians, the discussion of organ dona-
p r c t ~ . r . ~ I I~~l cr , L . l ~ l \oct 1 1 1 ~I ~ ~ ~ ~ O I - T I I I[ It Ii ~IIII/C\~ \ ~ ~ t t r r ~ I-11~ ~ i g . tion should be done by other individuals who are specifically
~ c . I ~ I I ~t \( ~ 4r q ~ r o \ l r l o l l1 1 ) \ L I L I ~ JL*~I\I(III\ re o11I> pL~rtl!,rrI.11cLl trained for this purpose. The decoupling of clinical decision-
111 L ~ ) I I L L ~ ~ I I !ttr
\ ~IIC 111 t~,r~,\r,(11 p.~t~c*~it,. I lit, o l i l e ~ t ~ i'lrc ~ ~ Ii~\. i s r J . making from a request for organ donation by trained individu-
111 p . ~ r r . IPII [lit , ~ ~ I ~ T I I C ,111~1
\~ ~ r r ~ ~ t ~ c r , o~t I .IL~I~II~, ~ ~ l l [ ~~ ~ C L I L I J I Ials I ~improves donation rates, and avoids an apparent conflict of
IIIC~>I,\\I\>III[\t i t ~ l i . 1 1 1 g l r~1o~L l r \ ci t 11 1 5 ~ i ~ \ L o v c r ctchi ~ rr l i ~d~L.1- , interest on the part of clinicians caring for the patient.
sion was wrong. The greater concern, however, has been for "slip-
pery slope" effects: the claim that lowering the barrier against .MU Diagnostic guidelines for establishing brain death
killing will make it easier for physicians to kill others, that bound- I ~ih1lc11~~'li
I o t different ages have been established, with infants
aries will become less distinct, and that patients without a clear and younger children requiring a longer period of observation
interest in dying will be harmed. In addition, the backlash against tli.lr~ olJcl- i h ~ i d r c no r d d o I c \ i e n t \ i-iet. (Jlicjptrr h-. I I. T l l c p c r ~ u c l
physician-assisted suicide may render the appropriate provision o t o l ~ w r v . l r i ~ )m.ly
n br shorrencd r h r t r ~ r g rhc l ~ L r l r 11t c t r n t i r r n ; ~ t ( ~ r v
of palliative care more difficult through fear of legal prosecution [e\rc \ t l i h ,I\ ,111 cl.lectroc.r1c.eph311>grdll~ jrirrr~on.;rrntirrg eler.trlca1
based simply on the dose of sedatives or narcotics administered. L - c r c l l r L ~ \II~IIL,C)
l o r c r r e l l r : ~ l I~L-~!LI\IOII >LI~LI~ (L~~-IIIL~II\~~~I~I~~
. i I ~ w l i rI ~ I o ~ t l )o L
u ~t o rile \YIIOICl7ra1111.( # I \ r r l L I ~ C L~I~~ 1 .I1 C- I~
.11>111t! 111 the LIII~IL,JI ~ I e t t r l ~ ~ ~ ~ i : ~I~I..III~ t l o r ~Jc.irIi (IIIL.ILILII~~
DISABLED NEWBORNS AND LSMT I , ~ l l u r r t o p c r t ( ~ n ia ~,omplrtrn c u r o l r r p l i cu;lnllr~.lrlc)ni. tnarly
rutions ions (.inti \OIIIL. s~dlc.b)IIJVCc.<rnhtl~hed p o l l c i c < SII~LIILII-
111s t l l c r t ~ l i ~ ~ rCLIIIIIILI~IOI~S,
cii r~-,tb, JIILIC ) ~ ~ ~ C S V . I ~ Iprsiodh.
~II
< j h \ r r v i n s ii s k i l l c ~ ic l ~ r i ~ c ~ .l ii rci r t o r ~ i i.I c o r i ~ p l e r r.'I~~;IIII
de.~tIi'.
examination including an apnea test may help parents who are
having difficulty with the use of neurologic criteria to determine
a child's death. The clinician should have performed the complete
examination previously so as not to be surprised by unexpected
findings, such as vigorous spinal reflexes.
Currently two states (New York and New Jersey) allow fami-
lies to object on religious grounds to the declaration of death
Chapter 3 . Ethics in Pediatric Care . 21

using "brain death" criteria. In effect, the clinical determination may involve enhanced communication or conflict resolution. For
of the cessation of cortical and brainstem activity sets the stage the vast majority of decisions involving the medical treatment of
for a discussion of forgoing LSMT, rather than the death of the children (including forgoing LSMT), pediatric clinicians and
patient. A unilateral decision not to initiate new or escalate exist- parents are usually in agreement about the desirability of the pro-
ing interventions is reasonable under these circumstances. A uni- posed intervention. The views of a child should also be given con-
lateral decision to withdraw existing interventions may be siderable weight, especially when the burden of treatment is great
inappropriate absent the need to triage scarce pediatric ICU and the potential benefit uncertain or remote.
resources. Institutional procedures for conflict resolution, includ- An IEC typically performs at least three different functions: (1)
ing involvement of the courts if necessary, should be followed. the drafting and review of institutional policy on such issues as
Absent applicable state law, ongoing third party reimbursement DNAR orders and forgoing LSMT; (2) the education of health
for the cost of continued LSMT for a "brain dead" patient may care professionals, patients, and families about ethical issues in
need to be addressed. health care; and (3) case consultation and conflict resolution.
/\Irho~lghrhr proscss case ~.0115ultallonma)' vilry, idrally rhr
CARDIAC DEATH. NHBD protocols have been developed to allow I E ( ~lioulcl. ~ ~ l o pa tcollahorarivr dpproach rhar uncover5 .>I1 rhr
for organ procurement after cardiac asystole. Organ procurement rc,ld~ly'iva~l~hlr and rclcvant facts. rakes into account the trel-
from NHBD can occur under either controlled (after planned Irlgs o t those i~ivolved,;tnd balance\ t h r vesreif Inrcrcsrs, whilc
withdrawal of LSMT) or uncontrolled (after failed CPR) cir- .irrlvlng at a recornmcndarion hasell o n a ionsisrcnt ethical analy-
cumstances. The routine use of NHBD protocols in pediatrics fol- sis. The Joint Commission on Accreditation of Hospitals requires
lowing planned withdrawal of LSMT may significantly increase these committees, or an appropriate alternative; the committee
the number of organs available for transplantation. The number often plays a consultative role when parents and medical staff
of potential donors depends somewhat on the choice of an accept- cannot agree on the proper course of action. IECs have acquired
able time period for asystole to occur after the withdrawal of considerable influence and are increasingly recognized by state
LSMT and before organ procurement (generally in the range of courts as an important aid in decision-making. The membership,
1-2 hr). policies, and procedures of an IEC should conform to accepted
~ t h i c a lconcerns about the development of NHBD protocols professional standards.
focus on two principles that have served as the basis for organ
donation: (1)the "dead donor rule" limiting the donation of vital
organs to those who are irreversibly dead, and (2) the absence of SCREENING AND GENETIC TESTING
conflict of interest between clinical care and organ procurement.
With NHBD protocols, irreversibility is limited to spontaneous Screening is the search for asymptomatic illness in a defined pop-
return of circulation after forgoing CPR, rather than failure to ulation; it is usually performed for the purpose of treatment, but
restore neurologic function in spite of any possible intervention. it is sometimes done for counseling or research. Several programs,
The waiting time after cardiac asystole to the start of organ pro- such as newborn screening for inborn errors of metabolism
curement varies among NHBD protocols, with some arguing for (phenylketonuria [PKU] and hypothyroidism), are counted
a uniform 5 min interval. There are rare case reports of sponta- among the triumphs of contemporary pediatrics. The success
neous return of cardiac function after more than 5 min of asys- of such programs sometimes obscures serious ethical issues that
tole, and uncertainty remains whether the generally accepted continue to arise in proposals to screen for other conditions for
neurologic criteria for death are satisfied after 5 min of asystole. which the benefits, risks, and costs have not been clearly estab-
On this basis, some argue for extending the time period between lished. Advances in genetics have led to exponential growth in
asystole and organ procurement to 10 min. The clinical finding the number of conditions for which screening tests are available,
of asystole does not define the patient's death absent a prior moral with insufficient opportunity to study each proposed testing
decision to forgo CPR. Proponents of NHBD protocols point out program.
that the use of neurologic criteria to determine death also involves The introduction of screening tests should be done in a care-
moral and religious values. fully controlled manner that allows for the evaluation of the costs
Some clinicians are concerned about the appearance of a con- (financial, medical, and psychologic) and benefits of screening,
flict of interest when families are approached about organ dona- including the effectiveness of follow-up and treatment protocols.
tion after a decision to withdraw LSMT. Also, the initiation of New programs should be considered experimental until the risks
organ preservation procedures before death may create a conflict and benefits are demonstrated. Screening tests that identify can-
of interest between the ongoing care of the dying patient and didates for treatment need to have demonstrated sensitivity, speci-
actions taken to preserve the viability of transplantable organs. ficity, and high predictive value, lest individuals be falsely labeled
Will families assume that the recommendation to withdraw and subject to possibly toxic treatments or to psychosocial risks.
LSMT was for the purpose of obtaining the child's organs? To As these tests are being developed, parents should generally be
avoid this interpretation, some argue that any discussion about y ~ \ c . rthr
~ opporruniry t o cxcrcisc inforrnecl consent or rcfilsal.
NHBD organ procurement after forgoing LSMT should be only Thew b,~feg~~;lrds have 11ut always I~eensysrcrn~~t~cally dpplircl tir
in response to a family-initiated question about organ donation. \irei'TIIIlg programs. ~)tterlrrsulring In srrlr.)ils tiarru tr, m a n y chil-
Also, the location and process of withdrawing LSMT should also circ.11. \ v ~ t h o ~ iornprnsatlllg
~r bcnrtits. Fa~ilil~ar
esamples bnclucir
be considered carefully. Some institutions withdraw LSMT in the r ~ , u i l n cter,il monitoring. wli~clicc~ntrlhuredto thc rl\iIig rare ul'
operating room after the child has been prepared for organ pro- cesarean sections with little benefit for many infants, and the
curement. As a result, there may be considerable pressure exerted screening of premature infants for acidosis, resulting in adminis-
on the clinicians managing the child to hasten death so that organ tration of toxic amounts of sodium bicarbonate before its risks
procurement can take place within the predetermined time limit. wcrc ndrquarrlv srudlcd.
.A ~ c = ~ z I \ ~ crrhisal
II': i.isur I \ whethcr screening sl~ot~ld he vol.
unr.?ry opt I I I " I ; rnurlnc. w ~ t hthe alliliv ru "opt o u t " or rcfurc;
INSTITUTIONAL (HOSPITAL) ETHICS COMMITTEES o r rri,~nJ:iror)-.A vc~lunr~ry approach entail5 a n ilifc>rmeddcc.6
\ l o l l 1y parcnrs Ilcforr scrcenrng. I onuern 1s often expressed t h a ~
The controversy over forgoing LSMT of disabled newborn ,crk~ng~ntorrnedionscnr IS ethically i~~appropri;~te trlr rrsrs v i
infants led to the formation of the "infant bioethics committee" clr,lr hrnrf r, sue11 a.; I'KI I scrrrning. t7ecar1~crefusal wtluld toll.
as a pediatric forerunner of today's institutional ethics commit- stitute neglect. Routine testing with an "opt out7' approach
tee (IEC).An IEC usually provides voluntary consultation, which requires an explicit refusal of screening by parents who object to
22 PART I 8 The Field of Pediatrics

this intervention. The principal ethical justification for manda- of peer interaction or acceptance and an ongoing need for
tory screening is the claim that society's obligation to promote parental support. While valuing parental expertise and involve-
child welfare through early detection and treatment of selected ment, clinicians should support adolescents in expressing their
conditions supersedes any parental right to refuse this simple wishes about medical treatment. The development of self-
medical intervention. Obtaining informed consent for newborn management skills depends on the capacity for self-determina-
screening may allow for more prompt and efficient responses to tion. Adolescents >14 yr old should be provided the freedom to
positive results and for incorporating experimental tests into make their own health care decisions with the guidance of their
established screening programs. Although more research is nec- parents and clinicians.
essary, one study showed that a reasonable attempt at consent
could be made on a statewide basis without excessive time or cost DECISIONS I N TERMINALLY ILL ADOLESCENTS. The presumption
and without undue effects on compliance. that an adolescent >14 yr old has the capacity to make binding
These same cwo ethical principles of demonstrated benefit jus- medical decisions should be extended to the provision of LSMT
tify~ngthe risks of screening and informed consent can be applied (and other end-of-life issues) for a dying adolescent. Most ado-
to genetic testing for late-onset disorders. The knowledge of lescents want to share end-of-life decision-making with other
increased risk status may lead to lifestyle changes that can reduce family members, highlighting the importance of open communi-
morbidity and the risk of mortality, or may precipitate adverse cation and flexibility about treatment preferences regardless of
emotional and psychologic responses and discrimination. Because legal status. The development of an advance directive may clarify
many adults choose not to be tested for late-onset disorders, we the perspective and wishes of the dying adolescent, with imple-
cannot assume that a child would want or will benefit from mentation emerging out of this collaborative process as respon-
similar testing. Genetic testing of children and adolescents for sible parents (and others) support the adolescent's insights,
late-onset disorders is generally inappropriate unless such testing values, and autonomy. From the time of diagnosis of a life-
will result In interventions that have been shown to reduce mor- threatening condition, clinicians should include the child in a
bidity and mortality when initiated in childhood. Otherwise, such developmentally appropriate process of communication that
testing should be deferred until the child has the capacity to make enables an increasing level of involvement in medical decisions
an informed and voluntary choice. up to and including palliative care. Such an approach builds a
foundation of mutual respect and trust, which will minimize the
ADOLESCENT HEALTH CARE potential for future conflict as the adolescent's condition deteri-
orates.
ADOLESCENT ASSENT AND CONSENT. Many adolescents resemble
adults more chan they do children in their competence to consent RESEARCH
to health care (see Chapters 12 and 111). Competence is not a
global quality: Teenagers may not be able to support themselves, The central ethical distinction between research and standard
yet they may still be competent to consent to health care. In addi- clinical practice is researchers' commitment to generating knowl-
tion to competence, there are public health reasons for allowing edge, perhaps to the benefit of future patients or society, in addi-
adolescents to consent to their own health care with regard to tion to their responsibility for patients who are the human
reproductive decisions, such as contraception, abortion, and subjects of the investigation. Research is defined in the federal
treatment of sexually transmitted infections. Strict requirements regulations as "a systematic investigation designed to develop or
for parental consent may deter many adolescents from seeking contribute to generalizable knowledge." For any research to be
health care, with serious implications for their health and other performed, the risks should be minimized and reasonable with
community Interests. respect to any anticipated benefits to the subjects and the impor-
Weighed against these arguments are the legitimate interests of tance of the resulting knowledge. Because children generally
parents in maintaining responsibility and authority for child cannot give voluntary and informed consent to their own research
rearing, including the opportunity to influence the sexual atti- participation, there are further restrictions on the research risks
tudes and practices of their children. Another claim is that public to which a child may be exposed. These restrictions specify the
support for access to such treatment, particularly contraception conditions under which a parent has the moral and legal author-
and abortion, implicitly endorses and encourages sexual activity, ity to permit a child to participate in research.
aggravating rather than ameliorating the problems. Similar con- In nontherapeutic research, there is no expected direct benefit
cerns underlie the objection to providing sterile needles for intra- for the subject; therefore, any risk may present an unfavorable
venous drug abusers for the purpose of reducing the risk of risk:benefit ratio. Some argue that children, along with other
acquiring hepatitis or HIV. Critics complain that such programs nonconsenting subjects, should never be used in nontherapeutic
give children the message that illegal drug use is supported by the research, as a person should never be used solely as a means to
state as long as it is done safely, even though it is now generally an end. The more widely held opinion is that children may be
accepted that access to scerile needles results in a decrease in new exposed to at least minimal risks, although the reasons for this
cases of AIDS. The pediatrician's role and behavior in these dis- exception are disputed. Some argue that children have a duty to
putes will be influenced by his or her own moral beliefs and by contribute to the social welfare, although the federal regulations
assessments of the competing facts and arguments. Physicians d o not allow competent adults to be used as research subjects for
need to consider the possibility that a moralistic position may this justification without their consent. Others argue that partic-
deter adolescents from seeking health care or counseling. ipation in research can provide a benefit by fostering a sense of
altruism or citizenship through a child's assent. The federal reg-
:I!LNESS 7 iic. r ~ o r l l ~r i ~r ~l rli c s sr ~ , t~ i i t i l c \ i t . l ~c[ i r \ r l o l ~ r n c n r ulations allow healthy children to participate in minimal-risk
~ n \ i d \ . ~ .gcr . , ~ c l t ~ . ~ l-1.11~11..1~111~
l\ t 1 4 1 1 i i I,,~I.CIII\. l i l ~ ~ t : research based o n an analogy to parental authority to make deci-
c ~ ~ . l l ~ l i ~ wit-
c t r r i t i i l ~ ~ l .I\\CI-TIIIL:
i~. ~ll~ji\~Ll~~ .111rl
. ~ l ~~I , t< IiI Y. I I T ~ 011 p e t l . I.C'I.I- sions about risk exposure in everyday life. The regulations also
t 1 + 1 1 i 4 1 1 p.111ti
\ [ l ) ~ L ~ l ~ i l 10
~ry ILII~L~IOII IIILIL~~I~~II~IL~II~I~ OLII\IL~C tlic state that children with a condition can be exposed to slightly
L111111i..~ ' I I L ~ C I - I>,ITSIIL.~J \11pe1.\ 1\1011. , 1 1 1 . i ~ I ~ ) I r c i\/11111ltl c ~ ~ t I A / \ C ,111 more than minimal risk in nontherapeutic research if the child's
increasing autonomy in health care decisions, a process that may experience is similar t o everyday life with that condition and the
be accelerated for children who are experienced in living with a anticipated knowledge is of vital importance for understanding
chronic disease. A chronically ill and/or dying adolescent may fail or benefiting that condition. This "minor increase over minimal
to achieve other normal developmental milestones due to a lack risk" category is the most controversial.
Chapter 3 H Ethics in Pediatric Care 23

Much of the controversy over nontherapeutic research stems inform children who are capable of understanding that partici-
from the wide variability in the interpretation of minimal risk. pation is not part of their care and that, therefore, they are free
The federal regulations define minimal risks as the risks that are to refuse to participate. The regulations do not require child
"ordinarily encountered in daily life or during the performance assent but only parental permission if the research offers a direct
of routine physical or psychologic examinations or tests." Some benefit to the child that would not otherwise be available. For
interpret this to include procedures similar to those done in some research, parental permission may not be required if an
primary care office visits, but others claim that an invasive pro- appropriate mechanism for protecting the children enrolled in the
cedure such as a liver biopsy may be done if the risks, in the hands research is established. This provision does not apply to research
of a particular investigator, are empirically no higher than those conducted under the jurisdiction of the Food and Drug Admin-
of a routine office visit or if the procedure is routine for a visit istration (FDA).
to a specialist. When originally proposed, the definition of In addition to the protection that informed consent is intended
minimal risk referred to the life of a healthy child. The regula- to provide, virtually all research involving human subjects in the
tions omitted this phrase out of concern that research would be United States is reviewed by an institutional review board (IRB),
hindered, thus contributing to the wide range of interpretation. required by federal regulations for institutions receiving federal
Many advocate restoring the phrase "of healthy children" to the research funds and for FDA-regulated drug research. It is uncer-
definition of minimal risk because valuable research on a condi- tain whether such review is legally required for research that is
tion may still proceed under the "minor increase over minimal not federally funded or for research in settings that receive no
risk" category. As originally proposed, the concept of minimal federal funds, such as private clinics. The principles of ethical
risk serves a moral purpose in limiting a parent's authority to decision-making that led to the involvement of ethics committees
permit nontherapeutic research on a healthy child. To define in clinical decisions argue for a similar review of research involv-
minimal risk using only statistical considerations (such as the ing children, regardless of the source of funding. For research that
product of probability and magnitude) may overlook this moral does not meet criteria for local IRB approval, there is a process
purpose. The risks of each intervention or procedure in the for federal review of research that "presents a reasonable oppor-
research need to be considered separately and balanced against IIII~IT! t-o t ~ l s ~ hrllc
~ ' r ~ ~ ~ i J e r ~ t . t~~~i ri rl ~v ~c i~~~OI-
. t ,~i ol l ~c \i i, ~ t ~ofo ~ ~
any direct benefit to the subject or knowledge to be gained. .I ,LTIIILI\ ~I-OI)I~I~I ,ittr't~rix ~ h lc~ ~ ~ , -c1r ~ l w~blt~>rc
tli ot L l i i l ~ l r e ~ ~ . "
The term therapeutic research is misleading in that not all inter- , \ K~IIC.S.II crIi1~.11 pr111~,1plt, 15 tli,~rIIILIIVIJ~IJI\ \vIi11%>rek.L~p<~lilc
ventions or procedures included in a research study may offer the o t v o l ~ r l l ~ , ~. tr~\i c l 111tortnc.d c.,jn\c.nt t i t . , ~ p p r ( ~ , ~ ~ l iI rr tc l .~bour
prospect of direct benefit to the subject. There are likely to be r~,L..iv~li I ~ . ~ ~ I ~ L 111 I c
~~~ t l ~.lIi r~ ~ i ,I I . \ l i t ~ i ~ 1101
i t c111Idrc1i
I~ ~ l ~ l l>c
nontherapeutic aspects of the research, such as an extra blood c . ~ ~T\L.,II.CI~
1 1 1 ~ 1 1 1 ~ 1 III l ~rnlcsasc'~c~lrrtii.ill!rlcc,ci\;lr!.. !In i ~ r \ ~ ~ ~ t r r ~ d c c i
test or chest radiograph. The nontherapeutic parts of the research result is that the majority of marketed medications are not labeled
need to be no more than a "minor increase over minimal risk" for use in children. Pediatricians are left with a difficult choice of
and cannot be justified by the anticipated benefit of other parts ~ i \ t i i , ~ ITICIII~.,III(PI~\ ..otj ~ : ~ t ~ .1nA c l " rtsk111g 1 1 1 ~ r t ~ . ~roxr~-iry
\c~~l or
of the overall research study. The risks of interventions that offer \i<r~L'.i\cil c t t i i , ~ i \ . or 1101 II\II~!: .I ~ l t e C l ~ i , ~ ~ .1nJ iotl ~lo~eri~i.~ll!
direct benefit can be more than minimal. The risks must be jus- L l < ~ l l I\ l l y ,IL l l l I L l ,111 lrl1~~rlr~.lllt l I l ~ r . ~ ~ ~ <c ~ ~ li \t ~l Li lTcb
l l ~~cl l,1 l ~ l l ~ l r ' l t c
tified by the anticipated benefit, and the balance of anticipated 1111, l i r t ~ l > l c IIIC ~ ~ ~~IIII~L*LI
. +[.1rcs li,l\ ,C~~III~CLI 6 nio p1rcnr t.xtcii-
benefit to the risk should be at least as favorable as that presented \IIIIJ, tor tlif ~C~~IP~II~.III<C ot sc11~1~~stcJ 11~~11'irr1c <ri~<I~ch, ~C-LIII-
by available alternatives. Being enrolled in a research study III~ 111 IIL,\\ l ~ c J ~ c ~ r I,JI~~IIII~~
r~L. tor [II,JII~ lnip(>rLLilirt i r ~ ~ Kci+ p.
should not disadvantage a child. Llr , l p p l l i . ~ ~ ~ ~rnll5t ) n . ; ~ n i l ~ l d\rcld~c.h
c 1 3 t c.hilJrcr~i~nl~..;,g r . ~ n r c ~ l
Innovative therapy is defined as a new and unproven inter- .I \pr.r.~tiL \\ dl\cLr. 111 .IJLIIII~III. SrdlirC ' i ~ ~ l ~ ~ i ;(I ~ ~111~ t ~ K~tio11.il
c c l
vention done primarily for the benefit of the patient, with no III\II~LI~L.Y ot I l c d l r / ~i i ~ c l c t ~ri;ludc ih~lclrcrl111 the .~l>srnie0 1 \<.I-
intent to gather new information. Such innovations may be more entific or ethical reasons to the contrary.
hazardous and ethically more problematic than research, in part
because they are not subject to peer review and because toxicity
is not being systematically assessed. This kind of therapy is also FETAL WELL-BEING AND TREATMENT
subject to abuse because its definition is a matter of intent, and
thus difficult for others to disprove. Although innovative medical As our knowledge of factors influencing fetal development and
and surgical interventions are not subject t o research regulations, well-being expands, there is increasing discussion about the
some argue that clinicians have a moral obligation to submit proper balancing of maternal and fetal interests when a pregnant
innovative therapies to formal evaluation. Others express concern woman's behavior affects the well-being of her fetus. Interven-
that the institutional system for review of research protocols I 11 \II\ 1.111 1111\\ I)c ~ I ~ r t ' i t ~ r ~ l ! ~ p i Iii
c ~ Ir ~ t n r iT(I\V;II.LI c 11ledii.il
~ .IIIL~

lacks the timeliness and expertise needed to evaluate innovative \ I I I . ~ I < . ~~O~I ~ L ~ I I I O I ~ \o f t l i c ~C'ILI~. rdthcv rh.111 ~o\i'ardrtic gcii~r.11
treatments. II~~.IILI~ o t r l i ~p r c g ~ i , i ~~\,OITI.III
it \VIIII. I WL.OIILIJ~Y ~ i i i p ~011 i r rhr
The regulations in the United States for the protection of i ~ e ~ ~ ,\, i , . VY\LIII.
L~ L~~IL.\~IOII\ *Irl,e ,117tji1r,I <II~IIL.I~I~I'\r c \ p o ~ ~ ~ t l ~ ~ l -
human research subjects rest on two foundations: (1)voluntary rt! \v1ien tlic ~nrcl-i~\ts o t the pregnant \\-r)nl,lll . 3 1 1 i i her trrn-.
and informed consent, and (2) the independent review of the .1p,>c,1r tr 1 c t > ~ \ l l ~T1irl.r i r . .Ire r w . ~ ,[>:~rrlC~~I,ir[\ i ( ~ l i t ~ . ! ) v c r >.1I'C'dS
~.~[
research risks. An ethical and responsible researcher is often 1 1 ~\ v l i ~ ~t l i ~ , ~ ~L ~ ~ , ~ wt~3l :~ ~II~ISIOII
~ > ~ ot ~ trr.11 1iir~i1~\1~ or ~ r
added as the 3rd foundation needed for the protection of human \II~QIC.II t r c ~ ~ r ~d ~i ~~~ 111~. ~L l~ rl ~i ~r p, t - l r r~i ~>iprcgli'i11r
st {vornrr) tol. c l r u ~
research subjects. The standard for informed consent in a and alcohol use.
research setting is higher than for clinical care because the risks The most dramatic of these conflicts arises when a pregnant
and benefits are typically less clear, the investigator has a conflict woman refuses standard, effective treatment essential for the
of interest, and humans have historically been subjected to unau- benefit of a fetuslinfant who is at high risk of death or serious
thorized risks when strict requirements for consent were not disability, such as refusal of cesarean section for placenta previa
respected. in a voluntary pregnancy near term involving a presumably
Adolescents who are competent may sometimes consent to be normal fetuslinfant. Courts in the United States have sometimes
research subjects. It is also generally acknowledged that children decided that a woman can be required to undergo such a proce-
should be given the opportunity to dissent, particularly for non- dure when the benefit to the emergent child is clear. A federal
therapeutic research, when there cannot be i claim that partici- court decided that such an order was inappropriate in a case
pation is in the child's interest. In the United States, national involving a 26 wk old fetus and, by implication, other cases in
regulations require that reasonable efforts be made at least to which the benefit of intervention was in doubt. In general, a clin-
24 rn PART I rn The Field of Pediatrics

ician should not oppose a pregnant woman's refusal of a recom- Brown SD, Truog RD, Johnson JA, Ecker JL: Do differences in the American
mended intervention unless (1)the risk to the pregnant woman Academy of Pediatrics and the American College of Obstetricians and Gyne-
is negligible, (2) the intervention has been shown effective, and cologists position on the ethics of maternal-fetal interventions reflect subtly
divergent professional sensitivities to pregnant women and fetuses? Pedi-
( 3 ) the harm to the fetus is certain, substantial, and irrevocable. atrics 2006;117:1382-1387.
When these three conditions exist, a clinician may try to persuade Caldwell PHY, Murphy SB, Butow PN, Craig JC: Clinical trials in children.
and, if unsuccessful, seek some other avenue of conflict resolu- Lancet 2004;364:803-811.
tion (such as through an IEC). Rarely, and only as a last resort, Casarett D, Kapo J, Caplan A: Appropriate use of artificial nutrition and
should a clinician seek judicial authorization to override a preg- hydration-Fundamental principles and recommendations. N Engl J Med
nant woman's dissent. 2005;353:2607-2612.
Child abuse statutes have also been invoked in attempts to Committee on Hospital Care and Section on Surgery, American Academy of
modify the behavior of women who ingest alcohol or illicit drugs Pediatrics: Pediatric Organ Donation and Transplantation: Policy statement:
during pregnancy and expose the fetuslinfant to harm. Pediatri- Organizational principles to guide and define the child health care system
andlor improve the health of all children. Pediatrics 2002;109:982-984.
cians considering reporting such cases must consider the likeli-
Committee on School Health and Committee on Bioethics, American Academy
hood of benefit from reporting, the harm to the child as well as of Pediatrics: Do not resuscitate orders in schools. Pediatrics
to the mother if criminal charges or custody changes are sought, 2000;105:878-879.
and the possible effects that reporting may have on driving preg- Fallat ME, Deshpande JK, Section on Surgery, Anesthesia, and Pain Medicine,
nant women away from the health care system, particularly from Committee on Bioethics: Do-not-resuscitate orders for pediatric patients
prenatal care. The U.S. Supreme Court has held that drug testing who require anesthesia and surgery. Pediatrics 2004;114:1686-1692.
of pregnant women without consent was in direct violation of Field MJ, Behrman RE (eds): Ethical Conduct of Clinical Research Involving
the Fourth Amendment, which provides protection from unrea- Children. Washington, DC, National Academy Press, 2004.
sonable searches. Freyer DR: Care of the dying adolescent: Special considerations. Pediatrics
2004;113:381-388.
Hall DMB: Children, rights, and responsibilities. Arch Dis Child 2005;90:
ACCESS TO HEALTH CARE: RATIONING 171-173.
(DISTRIBUTIVE JUSTICE) Kopelman LM: Are the 21-year-old Baby Doe rules misunderstood or mis-
taken? Pediatrics 2005;115:797-802.
Lazar NM, Shemie S, Webster GC, et al: Bioethics for clinicians: 24. Brain
The most serious ethical problem in health care in the U.S. may death. CMAJ 2001;164:833-836.
be the inequality in access to health care. No other major indus- Leask K: The role of the courts in clinical decision-making. Arch Dis Child
trial country rations basic health care on the basis of ability to 2005;90:1256-1258.
pay. Comprising nearly one of every five uninsured persons, more Lo B, Rubenfeld G: Palliative sedation in dying patients. JAMA
than nine million children and adolescents lack basic health care 2005;294:1810-1816.
coverage. This lack of adequate and affordable health care has Msall ME: The limits of viability and the uncertainty of neuroprotection: Chal-
serious consequences in terms of death, disability, and suffering. lenges in optimizing outcomes in extreme prematurity. Pediatrics 2007;119:
The central ethical principle at stake is fair opportunity to par- 158-160.
ticipate in the benefits of society; preventable death and disabil- Nelson RM, Botkjin JR, Kodish ED, et al; Committee on Bioethics: Ethical
issues with genetic testing in pediatrics. Pediatrics 2001;107:1451-1455.
ity undermine the claim that the society is one of equal
Provoost V, Mortier F, Bilsen J, et al: Medical end-of-life decisions in neonates
opportunity. Another aspect of the claim of unfairness is that the and infants in Flanders. Lancet 2005;365:1315-1320.
present system is maintained by those who are already advan- Solomon MZ, Sellers DE, Heller KS, et al: New and lingering controversies in
taged because of financial or social status, thereby aggravating pediatric end-of-life care. Pediatrics 2005;116:872-883.
existing inequalities. Tripp J, McGregor D: Withholding and withdrawing of life sustaining treat-
Rationing of health care can be defined as limiting access to ment in the newborn. Arch Dis Child Fetal Neonatal Ed 2006;91:F67-F71.
wanted and needed services of known benefit. It is increasingly Truog RD, Christ G, Browning DM, Meyer EC: Sudden traumatic death in
recognized that no society can provide all beneficial services to children. JAMA 2006;295:2646-2654.
all its citizens; rationing is therefore unavoidable. The question Vince T, Petros A: Should children's autonomy be respected by telling them of
is not whether to ration health care services but how to do so their imminent death? J Med Ethics 2006;32:21-23.
Vrakking AM, van der Heide A, Onwuteaka-Philipsen BD, et al: Medical end-
fairly. Apart from ability to pay, other ways of rationing could of-life decisions made for neonates and infants in the Netherlands,
be based on cost:benefit analysis, age, or likely effects on quality 1995-2001. Lancet 2005;365:1329-1331.
of life. Even universal systems of health care coverage effectively Walsh-Kelly CM, Lang KR, Chevako J, et al: Advance directives in a pediatric
ration through limited availability, with the option of purchasing emergency department. Pediatrics 1999;103:826-830.
additional desired services using private resources. Some argue Wendler D, Belsky L, Thompson KM, Emmanuel EJ: Quantifying the federal
that such a multitiered system is fair as long as the basic health minimal risk standard. JAMA 2005;294:826-832.
care package is appropriately defined and sufficiently funded. Woolley S: Children of Jehovah's Witnesses and adolescent Jehovah's Wit-
nesses: What are their rights? Arch Dis Child 2005;90:715-719.

American Academy of Pediatrics, ~ommitteeon Bioethics: Institutional ethics


committees. Pediatrics 2001;107:205-209.
American Academy of Pediatrics, Committee on Bioethics: Fetal therapy-

I
Ethical considerations. Pediatrics 1999;103:1061-1063.
American Academy of Pediatrics, Committee on Bioethics: Religious objec- - I , ma1 rssues tn redlatrlc
tions to medical care. Pediatrics 1997;99:279-281.
American Academy of Pediatrics, Committee on Bioethics: Ethics and the care
of critically ill infants and children. Pediatrics 1996;98:149-152.
American Academy of Pediatrics, Committee on Bioethics: Informed consent,
parental permission, and assent in pediatric practice. Pediatrics Pediatricians live and work in a multicultural world. Among the
1995;95:314-317.
American Academy of Pediatrics, Committee on Bioethics and Committee on
world's 6 billion people residing in >200 countries, >6,000 lan-
Hospital Care: Palliative care for children. Pediatrics 2000;106:351-357. guages are spoken. In virtually all countries, there is greater ethnic
Ashcroft RE: Reforming research ethics committees. Br Med J and economic diversity as the global population becomes more
2005;331:587-588. mobile and integrated; from 1970 to 2000, the foreign-born pop-
Bell MD: Non-heart beating organ donation: Old procurement strategy-New ulation in the United States increased threefold. According to the
ethical problems. J Med Ethics 2003;29:176-181. 2000 census, 25 to 30% of Americans self-identify as belonging
Chapter 4 1 Cultural Issues in Pediatric Care . 25

to an ethnic or racial minority group. Since 1990, the number of THE lMPORTANCE OF CULTURE TO MEDICAL PRACTICE. Culture is a
children in immigrant families has expanded sevenfold more community's or a society's shared history, beliefs, and values,
r a ~ i d l vthan the number of children in families with U.S.-born
1 ,
including frameworks for learning, understanding events and
parents such that currently 1 of every 5 children lives in an history, and defining concepts such as prosperity, success, knowl-
immigrant family. Whereas in 1920, 97% of immigrant families edge, and health. Cultures are dynamic and interactive, so that
in the United States were from Europe or Canada, in 2000, 84% even as individuals act within a culture, those actions effect
of U.S. immigrant children were from Latin America or Asia. changes in that culture. Although culture is not synonymous with
Nonwhite children are projected to outnumber white children in language, race, ethnicity, nationality, or socioeconomic status,
the United States by the year 2030. Increased migration and groups with similar backgrounds with respect to these charac-
diversity in the migrant pool is nor limited to the United States; teristics often share cultural norms.
immigrants account for over 15% of the population in >50 Tables 4-1 and 4-2 display some cultural values associated with
nations. four minority populations in the United States: Latinos, Muslims,
Physicians are not limiting their professional exposure to a Native Americans, and African-Americans, illustrating both areas
single country. The number of medical schools in the United o f significant overlap and great variation that are relevant to
States offering electives abroad has increased severalfold in the health perceptions and health seeking. Latinos may subscribe to
past decade, with most schools indicating an interest in continu- the importance of "personalismo," placing great imporrance on
ing or expanding these opportunities. With increased globaliza- politeness in the face of stress and adversity and thus expect a
tion of the economy, more physicians will have the opportunity display of warmth from their physician, including physical touch-
to practice ourside their homeland. ing such as handshakes, hands on the shoulder, and occasionally

I
RELEVANT CULTURAL NORMS
CULTURAL GROUP DESCRIPTION OF NORM CONSEQUENCES OF FAILURE TO APPRECIATE
Latino Fotalismo:Fate 18predetermined,reducing belief in the importanceof screening and prevention Less preventive screening
S~mpotio:Politenesslkindnessin the face of adversity-expectation that the physicianshould be polite and pleasant, not Nonadherence to therapy, failure to make follow-up visits
detached
Personolismo. Expectat~onof developing a warm, personal relationship with the clin~cian,includingintroductory touching Refusal to divulge important parts of medical history,dissatisfact~on
w ~ t htreatment
Respecto: Deferential behavior on the basis of age, social stature,and economic position, includ~ngreluctance to ask questions M~stakinga deferential nod of the headlnot asking questionsfor
understanding;anger at not receiving due signs of respect
Famihsmo. Needs of the extended family outrank those ofthe individual,and thus family may need to be consulted in Unnecessary conflict, inability to reach a decision
medical decision-making
Muslim Fasting during the holy month of Ramadan:Fast~ngfrom sunrise to sundown, beginning during the teen years Women are Inappropriate therapy; will not take medicines during daytime
exempted during pregnancy,lactation,and menstruation and exemptions for illness, but may be associated with a sense misinterpreted as noncompliance; misdiagnosed
of personal failure.
Modesty.Women's body including ha~r,body,arms,andlegs not to be seen by men other than in immediatefamily.Female Deep personal outrage, seeking alternative care
chaperone andlor husband must be present durtng exam and only that part of the body being examined should be
uncovered.
burh: Forbidden to touch members of the opposite sex other than close family.Even a handshake may be inappropriate. Patient discomfort, seeking care elsewhere
Afrerdeoth, body belongs to God.Postmortem exam will not be permitted unless required by law, fam~lymay wish to Unnecessary intensificationof grief and loss.
perform after-death care
Cieonliness essential before prayer: Individual must perform ritual ablutions before prayer,especially elimination of urine and Affront to relig~ousbeliefs.
stool.Nurse may need to assist in cleaning if patient a incapable.
God4 will: God causes all to happen for a reason and only God can bring about healing. Allopathic medicine will be rejected if it conflicts with rel~giousbeliefs,
fam~lymay not seek health care
Potrior(ha1,extended family:Older male typically is head of household and family may defer to him for decision-making. Child's mother or even both parents may not be able to make decisior..
about child's care;emergency decisions may require addit~onaltime.
Hoial (permitted) vs horem (forbidden) foods and medications:Foods and rnedicine containing alcohol (some cough and Refusal of medication, religious effrontery
cold syrups) or pork (some gelatin-coated pills) are no[ permitted.
Native American Notum provides the spiritual,emotional, physical,social,and biologic means for human life; by caring for the earth, Native Sp~rltualliving is required of Native Americans;if treatments do not
Americans wtll be provided for Harmonious living is important. reflect this view,they are likely not to be foliowed
Passive forbearone or right of the individual to chose hislher path: Another family member cannot intervene. Mother's failure to intervene in a child's behavior andlor use of
noncoercive disciplinary techniques may be mistaken for neglect
Norural unfoid~ngof the indiv~dual:Parents further the development of their children by limiting direct interventions and Many pediatric preventive practices will run counter to this philosophy
view~ngtheir natural unfolding.
Toiking arcle format to decision-making: interactive learning format including diverse tribal members Lecturing,excludtngthe views of elders is likely to result in advice that
I will be d~sregarded
African-American Great heterogeneity in beliefs and culture among African-Americans Risk of stereotyping andlor mak~ngassumptionsthat do not apply to a
specific patient or family
Extended famlly and varlatlons in family size and child care arrangementsare common, matriarchal decision-making Advicelinstructions given only to the parent and not to others involve
regarding health care in health derision-making may not be effective
Parenting style often lnvolves stricter adherence to rules than seen in some other cultures Advice regarding discipline may be disregarded if it is inconsistent with
perceived norms;other parenting styles may not be effective
History-based widespread mistrust of medical profess~onand strong orientation toward culturally specific alternative1 In patient noncompliance,physicianswill be consulted as a last resort
complementary rnedicine
Greater orientation toward others,the role of an ~ndividualis emphas~zedas it relates to others within a social network

Spiritualitylreligiosity important;church attendance central In most African-American families


Compliance may be difficult if the needs of one individual are stressed
above the needs of the group
Loss of opportun~tyto work with the church as an ally in health care
I
"Adherence to these or other bel~efrw~livary among members ofa cultural group based on nation of orig~n,spetihcrel~g~ous
seadegree of atcuituratlon,age of patlent,el
PART I The Field of Pediatrics

history, which is not shared by those outside medicine. Physician


reliance on "evidence-based practice" carries the implication that
it is synonymous with truth or real knowledge. Of particular
EYAhfPLES importance in the relationship with patients has been the lack of
Latino Use of traditional medicines (nopalesor cooked prickly pear cactus as a hypoglycemic physician insight into the existence of a physician culture and the
agent) along with allopath\cmedicine potential biases that may be inherent to that culture. While physi-
Recognition of disorders not recognized in Western allopathic medicine (empocho,in which cians around the world recognize the great strides that have been
food adheres to the intestines or stomach),which are treated with folk remedies but made in child survival through the use of oral rehydration therapy
also brought to the pediatric~an in the treatment of dehydrating diarrheal diseases, parents are
Cultural interpretationof disease (caida de moliera or fallen fontanel) as a cultural often anxious because the treatment does not stop the diarrhea.
interpretationof severe dehydration in infants Physicians may be dependent on a particular style of communi-
Muslim Female genital rnutilation:Practiced in some Muslim counrries,the majority do not practice cation and they may miss information from patients utilizing
it and it ir not a direct teaching ofthe Koran alternative narrative styles. Likewise, the physician-researcher
Koranic fa~thhealers. Utilize verses from the Koran, holy water, and specific foods to bring forms questions through the prism of his or her own beliefs and
about recovery
literature, thereby reducing the likelihood of exploring alterna-
Native Traditronal"interpreters"or"healers"interpret signs and answers to prayers Their advice may tive explanations or questions. While vast segments of the world's
Americon be sought in addition or instead of allopathic medicine population understand disease as an imbalance of "hot" and
Dreams are believed to provide guidance; mesgges in the dream will be followed "cold," this belief system has not been well represented in con-
African- Congregation may be asked to pray for the health ofa child temporary medical research.
American Specific pradlces such as using catnip or covering the child's head to reduce colic may be I
seen in some parts of the country CULTURAL COMPETENCE. Recognizing that physicians and
Herbs, home remedies may be used alone or in conjunction with allopathic
patients bring to their interaction personal and professional
values from multiple cultural systems, which have significant
implications for the delivery of health care, has lead to recogni-
hugging. By contrast, in the Muslim culture, for a person to touch tion of the need for physician "cultural competence." Among the
the bodv of a member of the opposite gender, including on the proposed frameworks for cultural competence, Campinha-
arm or a pat on the shoulder, is considered highly inappropriate. Bacote's model is the most frequently cited: (1)learning to value
Other values may be shared across disparate cultural groups. and understand other cultures, in part through self-awareness of
Multiple ethnic groups including Latinos and Muslims as well as one's own cultural values ("cultural awareness"); (2) learning
Sudanese and Bengalis share a cultural belief of fatalism, which basic fundamentals about other cultures, particularly those of the
has similar implications for health-seeking behavior although it patients with whom the physician will interact ("cultural knowl-
emerges from differing belief systems. Despite the existence of edge"); (3) developing the ability to apply cultural knowledge in
shared values within a defined population group, there may be patient encounters ("cultural skills"); (4) seeking exposure to
substantial variations within subgroups, such as the Latino cross-cultural interactions ("cultural encounters"); and ( 5 ) being
national subgroups (Cuban, Mexican, and so on), resulting in motivated to achieve all of the previous ("cultural desire"). This
great variation in specific health-seeking behaviors. Likewise, framework provides an important guide to pediatric education
within an overarching culture ("American"), persons who are and practice and, thus, will serve as the outline for the remain-
economically and/or politically disenfranchised may utilize resis- der of this chapter.
tance, inverting the values of the dominant socioeconomic group. Cultural Awareness. Recognition of the importance of differing
Such a reaction may include distrust of recommendations regard- cultural expectations and explanations is critical to a pediatri-
ing health care from members of the perceived dominant or con- cian's successful interactions with patients. For example, in the
trolling group. Immunizations have been viewed with distrust Muslim culture kinship is of great importance and decision-
among the poor in countries around the globe, as they were making may involve the extended family. Likewise, failure on the
believed t o be a form of birth control or sterilization and were part of the pediatrician to realize that a mother may not feel com-
often offered through institutions associated with "Western" and fortable or competent to make a decision about the health of her
postcolonial rule. There are often significant generational differ- child may result in an apparent noncompliance on the part of the
ences between foreign-born parents and their children, particu- mother.
larly as these children go through adolescence. With each Culltural Knowledge. Physicians and patients have differing def-
generation, assimilation moves the group further into the new initions of health and illness and differing concepts of the origins
country's "culture." of disease and therapeutic responses. Understanding the patient
perspective will both increase the likelihood of correct diagnosis
NEWLY RECOGNIZED CULTURAL GROUPS. Groups such as adoles- and patient adherence to therapy and decrease the possibility of
cents, gay, lesbian, or transgender youth, and deaf youth who misdiagnosis. The belief that becoming chilled causes dysentery
may not traditionally be recognized as cultural groups may have is common among rural Chinese and medical advice that directly
shared values with implications for health and health seeking. challenges or runs contrary to this belief may be disregarded.
Failure on the part of the pediatrician to recognize accepted lan- Likewise, diarrhea among Bangladeshi children during teething
guage and frame of reference of these groups may result in the may be regarded as normal and would not be identified as a
unintentional use of offensive terminology or assumptions, health issue. Thus, asking the parent if the child has been ill might
leading to loss of the physician's credibility or noncompliance not reveal the presence of diarrhea. Rubbing a coin against a
from the patient. child's skin is thought by some parents in Asia to reduce fever.
Failure by the pediatrician to recognize the practice of "coining"
could lead to the erroneous diagnosis of a rash or child abuse.
IIICLII~III~
,IIv) li.1, .i ~ I i ~ t ~ ~ i i. Li i I~r ~r i r c 1.ikc
. o r I i c 1 - CUIILI~~II S~-OLI~\, Cultural Skill. Describing a diagnostic or therapeutic course of
~ l I ~ ! . s ~ c i . l i i s \i1.11.c .I c o r n n i o t l h ~ \ r o r \ . .ILII~III.III~ r l i t , \ d i i i e i-trlt. action that respects cultural beliefs but is consistent with good
ino~it*I\. . h L i r ~ 1 ~rgl i c , L l n l c ~ ~ L . ~ ~ I I . , I I ~ PL .I o- ~~ i r < c \ tli.11 i i r i ~ k tlie 111.ih- medical practice can be challenging. Common among many
rereit tfbr <.llLr.iilir ~ n t r tr,iirling i tor. r l r r p r o l t . , c ~ r ~ r.tnLl ~, ~ ~ ~ l ~ z i r t Latino
l ~ - groups is the belief of empacho, a condition wherein food
ing to a common meaning of "competence" in medical practice. is "stuck" to the stomach or intestinal wall, resulting in obstruc-
Physicians learn a new way to describe health and illness, requir- tion. The condition is believed to cause nausea, vomiting, diar-
ing a new vocabulary and a prescribed pattern to the narrative rhea, and anorexia. Although most Latino parents would take a
Chapter 5 rn Maximizing Children's Health Screening, Anticipatory Guidance, and Counseling 27

child with empacho to the physician for treatment, in Western Flores G: Culture, ethnicity, and linguistic issues in pediatric care: Urgent pri-
settings, a pediatrician diagnosing the condition as viral gas- orities and unanswered questions. Ambul Pediatr 2004;4:276-282.
troenteritis might only advise supportive management, leaving Flores G: Culture and the patient-physician relationship: Achieving cultural
the parents perplexed and with no option but to seek indepen- competency in health care. J Pediatr 2000;136:14.
Hernandez DJ: Changing demographics: Past and future demands for early
dent treatment from a folk healer. A culturally skilled pediatri- childhood programs. Future Child 1995;5:145-160.
cian might suggest partnering with the traditional healer in such Kirk-Smith MD, Stretch DD: The influence of medical professionalism on sci-
a situation. Likewise, in response to parents subscribing to a entific practice. J Eva1 Clin Pract 2003;9:417-422.
belief in fatalism and, consequently, a notion that preventive med- Lawrence P, Rozmus C: Culturally sensitive care of the Muslim patient. J Tran-
icine or screening is not necessary, a skilled pediatrician might scult Nurs 2001;12:228-233.
suggest that screening is the mechanism through which their Lieu TA, Finkelstein JA, Lozano P, et al: Cultural competence policies and
destiny is intended to be reached. other predictors of asthma care quality for Medicaid-insured children. Pedi-
Central to "cultural skill" is the employment of language fully atrics 2004;114:e102-e110.
comprehended by the child's parents. This goal is best realized if Pachter LM: Culture and clinical care: Folk illness beliefs and behaviors and
their implications for health care delivery. J A M A 1994;271:690-694.
the pediatrician is conversant, if not fluent, in the parent's lan- Reimann JO, Talavera GA, Salmon M, et al: Cultural competence among
guage, and thus a requirement for a second language is a rea- physicians treating Mexican Americans who have diabetes: A structural
sonable goal for physicians. Familiarity with a language should model. Soc Sci Med 2004;59:2195-2205.
not be confused with fluency or even competency. Professional Smitherman LC, Janisse J, Mathur A: The use of folk remedies among chil-
interpreters should be available and accessed to overcome the dren in an urban black community: remedies for fever, colic and teething.
language barriers. Ad hoc use of individuals at the workplace Pediatrics 2005;115:297-304.
who are known to possess skill in the indicated language and/or Taylor JS: Confronting "culture" in medicine's "culture of no culture." Acad
use of telephone interpreter services may suffice if a professional Med 2003;78:555-559.
interpreter is not available. A genuinely bilingual family member
or friend may be helpful, but issues of confidentiality, disruption
of social roles, and uncertain or inaccurate translation of medical
terms may pose serious problems. Medical errors occur at a sig-
nificantly higher rate among non-English speaking patients when
nonprofessional (e.g., family members) translators are used to
obtain a history or give medical advice.
Cultural Encounters. While cultural knowledge may be acquired

I
through didactic training, the development of cultural skills
requires experience that can only be gained through repeated Gau;nr&bg Joseph F. Hagan Jr and
"cultural encounters." Studies have confirmed that, after con-
trolling for relevant variables, clinicians provide lower quality of Paula h.6. ~mcan
care to Latino and African-American patients, with these children
being less likely to receive analgesia andlor nebulizers for asthma.
Latino mothers have reported clinician attitudes as a major The health supervision encounter with the well child is the key-
barrier to seeking care for their children. Another study among stone to the care of the infant, child, and adolescent in the United
physicians revealed that participation in diverse medical educa- States. No other nation's health care system places such empha-
tional settings and experience in community clinics predicted cul- sis on periodic and regular preventive health care, and although
tural knowledge. Cultural knowledge and participation in diverse preventive services are also recommended for adults, the con-
educational settings, as well as Latino ethnicity and bilingual stantly changing tableau of a child's development lends added
skills, predicted cultural awareness. Only cultural awareness pre- value to these encounters between children and their families and
dicted culturally competent actions. Consistent with observations practitioners of pediatric health care.
that cultural competence may not be valued in the traditional The evolution of this preventive health care approach is derived
medical culture is the observation that higher specialty training from the long-standing view that the science of pediatrics is a
(e.g., subspecialty training among internists compared to general science of health and development. To assure the optimal health
of rhc tlc.\,clc~plrt~ i l l ~ l ~lxdl.rtri~,
l, iarc In t h ~ cclullrry
h cir)lvr-cl into
physicians, family medicine, or internal medicine generalists) pre-
dicted less cultural awareness. In another study among children, rigitl.~rl?~chr~lult~if v ~ r t t tir , as>urc .~diquvirI I L I I ~ I I I O I I ili'frit
. .t11J
two thirds of whom had persistent asthma, patients receiving care I I I I I T I O I XI L ~ g c ~111 r l \ ~ L~IW;ISL,\. .IIIJ{)l>\cr~c
~ tc.ctiot~\ 1l1t, ~ ' h i l ~ l ' s

from practice sites with the highest cultural competence scores ~1~\~.Iopriir111. I I I ~ I ~ I ~ I I ~ I ~ , Iriitlr1t1rln
~ ~ o I ~ . ~+ws~~IE ~ 1, I1IJcvrlcrp-
4[ ,
~ ~ i ~ , r i .i,w\\1nc1ir
t , ~ l rern.1111 c~sc~~ri.jl c l c ~ n c ~ ot
~ t s111c ivrll c h ~ t ~ l
were less likely to underutilize preventive asthma medications.
Cultural Desire. Cultural competence is not something that can health supervision visit, but changes in the population's health
be achieved and retained in the absence of continued effort. The have led to the addition of other components to the content of
recognition that culture is integral to health and healing, and to today's well child encounter.
disease and sickness, is central to the concept of "cultural com-
petence." Understanding of the role of culture in health outcomes PERIODICITY. The frequency and content for well child care activ-
is nascent, however. Although speculation abounds, it is not yet ities are derived from expert consensus, both from federal agen-
known why less acculturated Latinos in the United States demon- cies and professional organizations such as the American
strate significantly lower rates of low birthweight, depression, Academy of Pediatrics (AAP), and from evidence-based practice,
tobacco use, illicit drug use, and older age at 1st intercourse com- when available. The Periodicity Schedule (Table 5-1) is a compi-
pared to those who are more acculturated. Likewise, less accul- lation of recommendations listed by age-based visits (Table 5-2).
turation among Asian children is associated with lower It is intended to guide practitioners of pediatric primary care to
prevalence of chronic illness. Perhaps environment more than perform certain services and make observations at age-specific
gene type may represent a significant influence on the phenotype VlSltS.
of acculturated individuals.
7MW!!tNES. 6t.i r r d l c jrg.1~lratlons have compiled recommenda-
rtorl, o r g r l l J t . I ~ r ~ c *t rr l r 1 1 0 ~ 3the care of well children should be
Eschiti VS: Holistic approach to resolving American IndianIAlaska native ,1~z1 )mpltshzcl. I h ~ c t,)rr~~rt.hensive ~ guides are based on the Peri-
health care disparities. J Holist Nurs 2004;22:201-208. ~ he~lulc.I,rlt the) rvpand it further and recommend how
c , r l ~ i l tSL
28 PART I rn The Field of Pediatrics

~ r o v i d eadvice about healthy behaviors. These activities lead to


the formulation of appropriate anticipatory guidance and health
INtANLI rtnlulllC1TY ScHEbu~t advice.
in~tiaivisit Clinical detection of disease in the well child encounter is
Newborn accomplished by both surveillance and screening. In well child
in the 1st wk care surveillance occurs in every health encounter and is enhanced
I rno by the opportunity for repeated visits and observations with
2 rno advancing developmental stages. It relies on the experience of a
4 rno
skilled clinician over time. Screening is a more formal process uti-
6 rno
9 rno
lizing some form of tool, which has been validated and has
known sensitivity and specificity. For example, anemia surveil-
EARLY CHILDHOOD PERIODICITYSCHEDULE
lance is accomplished through taking a dietary history and
1 Yr seeking signs of anemia in the physical examination. Anemia
15 rno
18 rno screening is by hematocrit or hemoglobin tests. Developmental
2 Yr surveillance relies on the observations of parents and the watch-
3 Yr ful eyes of providers of pediatric health care who are experienced
4 yr in child development. Developmental screening utilizes a struc-
MIDDLE CHILDHOOD PERIODICITY SCHEDULE tured developmental screening tool or approach by personnel
5 Yr trained in its use or in the scoring and interpretation of parent
6 Yf report questlonnalres.
8 Yr The 2nd essential action of the well child encounter, disease
10 yr prevention, may include both primary prevention activities
ADOLESCENCE PERIODICITYSCHEDULE applied to a whole population and secondary prevention activi-
11 yr ties aimed at patients with specific factors of risk. For example,
counseling about reducing fat intake is appropriate for all chil-
dren and families. Counseling is intensified in the presence of a
family history of hyperlipidemia and its sequellae. The child and
16 yr adolescent health care professional needs to individualize disease
17 yr prevention strategies to the community, as well as the specific
18 yr family and patient.
19 yr Health promotion and anticipatory guidance activities distin-
20 yr guish the well child health supervision visit from all other encoun-
21 yr ters with the health care system. Disease detection and disease
From Green M,Palfrey JS (ed~ton).Br~ghtFuturer:Guidelines for Heahh Supervion ofbfonts, (hildren, andAdolescents, 2nd I prevention activities are germane to all interactions of children
rev Arlinotan.VA.Nat~onalCenter for Educat~onIn Maternaland Child Healrh. 2W2 with physicians and other health care providers, but health pro-
motion and anticipatory guidance shift the focus to wellness and
to the strengths of the family, for example, what is being done
practitioners might accomplish the tasks outlined in the Period- well and how this might be improved. This approach is an oppor-
icity Schedule. In addition to numerous recommendations devel- tunity to help the family address relationship issues, to broach
oped by individual communities or local health care systems, important safety topics, to access community services, and to
three major sources of guidelines have been: Bright Futures, from engage with extended family, school, neighborhood, and church.
the Maternal Child Health Bureau of the U.S. Department of It is not possible to cover all the topics suggested by compre-
Health and Human Services, the American Academy of Pedi- hensive guidelines such as Bright Futures in the average 1 8 min
atrics' Guidelines for Health Supervision, and the American well child visit. Child health professionals must prioritize the
Medical Assoc~atlon'sGuidelines for Adolescent Preventive Ser- most important topics t o cover. Consideration should be given to
vices (CAPS).Under the leadership of the Maternal Child Health a discussion of:
Bureau, these organizations, the National Association of Pediatric
Nurse Pract~tioners,the American Academy of Family Physicians, The topics where evidence suggests counseling is effective in behavioral change
and others have developed the Bright Futures Guidelines, 3rd The topics where there is a clear rationale for the issue's critical importance to health, for
E d l t i ~ n This
. subsumes previous guidelines and is consistent with example,"back to sleep" to prevent SIDS, physical activity
the AAP Perlodic Schedule. See Table 5-1. - A summary of the child's progress in emotional and social development, physical growth,and
strengths
TII%Ytw-WLbWldC \veil i h ~ l dc,t~r,ulltt.r11.1s u n l c l u r .
I hc Issues that address the questions, concerns, or specific health problems relevant to the indi-
L L ~ I I I ~ I ~ ~ I ~~OI I~-I IVI O p l i \ \ ~ i , l Ll ~ r ~~ r ~x lio t ~ o n . lLVCII
~ ~ I ~ I ~t IhIeI ~ l vidual family
being o t children and youth. Child health professionals, includ- Community-specificproblems that could significantly impact the child's health,for example,
ing pediatr~cians,family medicine physicians, nurse practitioners, bike paths that promote activity or neighborhood violence from which children need
and phys~cianasslscants, take advantage of the opportunity the protection
well child visits provide to elicit parental questions and concerns,
gather relevant family and individual health information, perform It is important to note that this approach is directed at all chil-
a physical examination, and initiate screening tests. dren, including those with special health needs (see Chapter 38).
The tasks of each well child visit include: Children with special health needs are no different from other
children in their need for guidance about healthy nutrition, phys-
Disease detection ical activity, progress in school, connection with friends, a healthy
Disease prevention sense of self-efficacy, and avoidance of risk-taking behaviors. The
Health promotion coordination of specialty consultation, medication monitoring,
Anticipatory guidance and functional assessment, which should occur in their periodic
visits, needs to be balanced with a discussion of the child's unique
To achieve these outcomes, health care professionals employ ways of accomplishing the emotional, social, and developmental
techniques to screen for disease, screen for risk of disease, and tasks of childhood and adolescence.
Eac e care These gu~ddnesrepresent a consensus by the Cornrn~tteeon Practice an, 'In t~n~ultation
of 4#@)alonal cornrnlnees and sedlons ofthe Arnerlcan Academy of Ped rnphasizes the
dev , - gredi-importance
," . -. of continuity of care in cornpcehensive health superv%i'in andthe need to avo~d
---- - - _ - - -of care, - - - .. - --
< - - -- - -
INFANCY< EARLY CHILDHOOO~ DOLE CHILDHOOD' -
. - -
ADOLESCENCE"
-
a
< .
A -

PREWATAL~ NEWBORN' 2-4d1 Bv I rno 2 rno 2 rno 6 rno 9 rno 12 rno 15 mo 18 rno 24 rno 3v 4v 5v 6v 8v 10 v 17 v 12 v 13 14 v 15 v 16 v 17 v 18 v 19 v 2Ov

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s
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s
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o .
s
s
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5
s
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s
s
.
s
s
. .
5
s
. . .
S
s
. .
S
s
. .
0
~
.
6

.
o
0

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0
o
.
0

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o
.
0 0
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s ~ s
30 . . PART I The Field of Pediatrics

IWAWV AND HRLY CHkBHdQIB. Nutrition, .physical acrivity, to develop strong family and peer connections, competence in a
~ k p'mkty,
, and emotional, social, and physlcal growcb along variety of arenas, ways to do things for others, and appropriate
with parental well-being are ujtical for all children. For each well independent decision-making.
child visir, there are topics that are s d c to individual children
based on heir age, family situation, chronic health condition, or OFFICE SYSTEM CHANGE FOR QUALITY IMPROVEMENT. Some of the
a parental concern, for example,"back to sleep," activities ro lase office strategies to improve the preventive services delivered to
weight, and fences around swimming pools. Atrention should children and youth include screening schedules and parent hand-
also be focused on rhe family milieu, for example, screening for outs, flow sheets, registries, and the use of parent and youth pre-
maternal depression (especidy depression) and ;her visit questionnaires. These efforts are part of a larger national
mental illness, family violence, substance abuse, nutritional inad- effort that is built on a coordinated team approach in the office
equacy, or lack of hous~ng.These Issues are essent~alto the care setting and the use of continuous measurement for improvement.
of young ch~ldren.
Answering parents' questions is one of the most imponant pri- EVIDENCE. The clinical encounter with the well child is guideline
orities of the weU child visit. Promoring family-centered cam and and recommendation driven and requires the integration of clin-
partnership with parents increases the ability to elicit patent coo- ician goals, family needs, and community realities in seeking
cerns, especially about rheir child's development, leanring, and better health for the child. Few well child care activities have been
behavior. I t is imwrtant to identify chiidren with deveiotrmental evaluated for efficacy, yet these activities are highly valued; lack
disorders as earlias possible, ~eveio~meotal surveillanceat every of evidence is not the same as lack of benefit. The rationale for
visit combined with a smctured developmenral screening at some well child care activities is a balance of evidence from research,
visits is a way to improve diagnosis, ispecially of &s of the clinical practice guidelines, professional recommendations, expert
more sslrbrle language delays. opinion, experience, habit, intuition, and preferences or values.
Clinical or counseling decisions and recommendations may also
MIDOLE CHILDHOOD AND ADOLESCENCE. As the child enters be based on legislation (seatbelts), on common sense measures
school-aged years, a d d ~ t ~ o n acons~derations
l emerge. The six not likely to be studied experimentally (lowering water heater
health behaviors that are most important In adolescent and adult temperatures), or on the basis of relational evidence (television
morbidity and mortality are: nutrition, physical activity, sexual- watching associated with violent behavior in young children).
ity related behavior, tobacco, alcohol and orher drug use, behav- Most important, sound clinical and counseling decisions
iors that contribute to unintemional and intentional injuries, and are responsive to family needs and desires, and support "patient-
violence. Emotional well-being with attendon to the develop- centered decision-making."
mental tasks of adolescence (competence at school and orher
actlvltles, connection to fr~endsand family, autonomy, empathy, CARING FOR THE CHILD AND YOUTH I N THE CONTEXT OF THE FAMILY
and a sense of self-worth), as well as early diagnos~sand treat- AND COMMUNITY. A successful primary care practice for children
ment of mental health problems, are of equal importance. incorporates families, is family centered, and embraces the
concept of the medical home. A medical home is defined by the
OFFICE INTERVENTION FOR BEHAVIORAL AND MENTAL HEALTH AAP as primary care that is accessible, continuous, comprehen-
ISSUES. Twenty percent of prlmary care encounters wlth ch~ldren sive, family centered, coordinated, compassionate, and culturally
are for a behavioral or mental health problem, or are s~ckness effective. In a medical home, a pediatrician works in partnership
v ~ s ~ compl~cated
ts by a mental health Issue. Pedlatr~clansneed with the family and patient to assure that all medical and non-
Increased knowledge for d~agnos~s, treatment, and referral crlte- medical needs of the child are met. Through this partnership, the
rl 1 i [ ~ r.I~~LIIIIOI~ C I ~ ~I II~l~ ~ I [ ~ r( t iL LII\CII~IC ~ ~ ~ I I ~\l)l \ [L)I. J t l ~ r c \
child health care professional helps the familytpatient access and
- 4

\IIII~,.II~\IL.I!. ,IIIC~ .I~IILIII<~ J ~ \ o r L l e ~ ..I\. \ v ~ s l l'I, ~ r ~i t r i J t ~ r ~ r , i r i ~ { ~ ~ i ~


a)t r l ~ c -p l l c ~ ~ -~~I bgb
I~ i h1 1~1 ct l ~i ~ .t ~ ~ c q u c ~l ~~ ir tcl \~~ r i l ~li. v!JL I ~ ~ T ~ ~ J ~ I L -
ltlcLIlL.lrl~r1~~ ~.l l c ~ t ~ l l r L l ~ c r l1 l1 c1 l l lrc l l L l \lol-L1l c l l < l l l g e I \ <ll\ll .a11

lIllpr~(.l.111! ~ i ' ~ p o l l \ l [ ~ l l ll lt t t\l l r , i ~ l l l l c l , l l 1 . .\!~rtiV.lllc?lldl l l l t c r \ I 1 ' M -


m ~ . L l ~ c .h~ol t ~ l c .11111.11\0 111~ > ~ i r t ~ i ~iv1t11
t . ~ hi o~i l ~
l ~ l l t r ~ l i1l 1
\ .1 ~ 1 1 i l v r \
ing provides a structured approach that has been designed to help
patients and parents identify the discrepancy between their desire .ilid C~~ICAII(>IIp r r r t c \ \ ~ o ~ i . i l \'11115
J I I ~otl1t.r I i ~ . l l t h . r c c t h I)II J cl~;xr

for health and their behavioral choices. It also allows the clini- understanding of the important role that the community plays in
cian to use proven strategies that lead to a patient-initiated plan supporting healthy behaviors among families. Communities
for change. where children and families feel safe and valued, and have access
to positive activities and relationships, provide the important base
that the health care professional can build on and refer to for
needed services that support health but are outside the realm of
the health care system or primary care pediatric office. It is impor-
tant for the medical home and community agencies to identify
mutual resources, communicate well with families and each other,
and partner in designing service delivery systems. This interac-
tion is the practice of community pediatrics, whose unique feature
is its concern for all of the population: those who remain well but
need preventive services, those who have symptoms but do not
receive effective care, and those who do seek medical care either
in a physician's office or in a hospital.

American Academy of Pediatrics, Committee on Community Health Services:


The pediatrician's role in community pediatrics. Pediatrzcs
1999;103:1304-1307.
American Academy of Pediatrics, Committee on Practice and Ambulatory
Medicine. Recommendations for preventive pediatric health care. Pediatrics
2000;105(3):645-646.
Chapter 5 Maximizing Children's Health Screening, Anticipatory Guidance, and Counseling 31

American Academy of Pediatrics, Division of Health Policy Research. Periodic Moore K, Halle T: Preventing problems vs. promoting the positive: what do
Survey of Fellows #56: Executive Summary, Pediatricians' Provision of Pre- we want for our children? Child Trends Research Brief www.childtrends.
ventive Care and Use of Health Supervision Guidelines, May 2004. org. May 2000.
American Medical Association: Guidelines for Preventive Health Services Murphey DM, Hale K, Carney J, et al: Relationships of a brief measure of
(GAPS) Recommendations. Chicago, American Medical Association, 1997. youth assets to health promoting and risk behaviors. J Adolesc Health
Bordley WC, Margolis PA, Stuart J, et al: Improving preventive service deliv- 2004;34:184-191.
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Green M, Palfrey JS (eds): Bright Futures Guidelines for Health Supervision J Adolesc Health 2000;27(1):1-2.
of Infants, Children, and Adolescents, 2nd ed. Arlington, VA, National Resnicow KD, DiIorio C, Soet JE, et al: Motivational interviewing in health
Center for Education in Maternal Child Health, 2000. promotion: It sounds like something is changing. Health Psycho1
Haggerty RJ: Community pediatrics: Past and present. Pediatr Ann 2002;21:444-451.
1994;23:657-658, 661-663. Stein MT, Wolraich MI, Cohen GJ, et al: Guidelines for Health Supervision
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