Racial/Ethnic Disparities in Neonatal Intensive Care: A ......LIMITATIONS: Quantitative...
Transcript of Racial/Ethnic Disparities in Neonatal Intensive Care: A ......LIMITATIONS: Quantitative...
Racial/Ethnic Disparities in NeonatalIntensive Care: A Systematic ReviewKrista Sigurdson, PhD,a,b,c Briana Mitchell, BS,a,c Jessica Liu, PhD,a,c Christine Morton, PhD,d Jeffrey B. Gould, MD, MPH,a,c
Henry C. Lee, MD, MS,a,c Nicole Capdarest-Arest, MA, LIS, AHIP,e Jochen Profit, MD, MPHa,c
abstractCONTEXT: Racial and ethnic disparities in health outcomes of newborns requiring care in theNICU setting have been reported. The contribution of NICU care to disparities in outcomes isunclear.
OBJECTIVE: To conduct a systematic review of the literature documenting racial/ethnicdisparities in quality of care for infants in the NICU setting.
DATA SOURCES: Medline/PubMed, Scopus, Cumulative Index of Nursing and Allied Health, andWeb of Science were searched until March 6, 2018, by using search queries organized aroundthe following key concepts: “neonatal intensive care units,” “racial or ethnic disparities,” and“quality of care.”
STUDY SELECTION: English language articles up to March 6, 2018, that were focused on racial and/or ethnic differences in the quality of NICU care were selected.
DATA EXTRACTION: Two authors independently assessed eligibility, extracted data, and cross-checked results, with disagreements resolved by consensus. Information extracted focused onracial and/or ethnic disparities in quality of care and potential mechanism(s) for disparities.
RESULTS: Initial search yielded 566 records, 470 of which were unique citations. Title andabstract review resulted in 382 records. Appraisal of the full text of the remaining 88 records,along with the addition of 5 citations from expert consult or review of bibliographies, resultedin 41 articles being included.
LIMITATIONS: Quantitative meta-analysis was not possible because of study heterogeneity.
CONCLUSIONS:Overall, this systematic review revealed complex racial and/or ethnic disparities instructure, process, and outcome measures, most often disadvantaging infants of color,especially African American infants. There are some exceptions to this pattern and each areamerits its own analysis and discussion.
aPerinatal Epidemiology and Health Outcomes Research Unit, Division of Neonatology, Department of Pediatrics, School of Medicine, Stanford University and Lucile Packard Children’s Hospital,Palo Alto, California; bDepartment of Social and Behavioral Sciences, School of Nursing, University of California, San Francisco, San Francisco, California; cCalifornia Perinatal Quality CareCollaborative, Palo Alto, California; dCalifornia Maternal Quality Care Collaborative, Palo Alto, California; and eUniversity of California, Davis, Davis, California
Dr Sigurdson conceptualized and designed the study, ran the search strategy, drafted the initial manuscript, and revised the manuscript; Ms Mitchell conceptualizedand designed the study, ran the search strategy, assisted in drafting the initial manuscript, and revised the manuscript; Dr Liu assisted in drafting the initialmanuscript and revised the manuscript; Drs Morton, Gould, and Lee assisted in running the search strategy and revised the manuscript; Ms Capdarest-Arest designedthe search strategy, assisted in drafting the initial manuscript, and revised the manuscript; Dr Profit conceptualized and designed the study and reviewed and revisedthe manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Ms Mitchell’s current affiliation is Department of Obstetrics, Gynecology and Reproductive Sciences, University of California, San Francisco, San Francisco, CA.
DOI: https://doi.org/10.1542/peds.2018-3114
Accepted for publication Apr 10, 2019
To cite: Sigurdson K, Mitchell B, Liu J, et al. Racial/Ethnic Disparities in Neonatal Intensive Care: A Systematic Review. Pediatrics. 2019;144(2):e20183114
PEDIATRICS Volume 144, number 2, August 2019:e20183114 REVIEW ARTICLE by guest on December 27, 2020www.aappublications.org/newsDownloaded from
The preterm birth rate is 49% higherfor black or African American womenthan for all other women in theUnited States.1 Preterm birth is linkedto increased mortality, makingpreterm birth or very low birthweight (VLBW) the leading cause ofinfant death among black infants.2 Anadditional component to racial and/or ethnic inequity in infant outcomesis differences in NICU quality of carestratified by race and/or ethnicity.3
Disparities in quality have been foundin other areas of health care,including, for instance, cancer care,4
cardiovascular care,5 and pediatriccare.6
The advantage of addressingdisparities in care delivery is thatthey are amenable to improvementthrough quality improvement (QI)methodology, with the potential forspreading solutions at scale withlong-term benefit. To facilitateapproaches for measurement,benchmarking and improvement, wehave conducted a systematic reviewof the literature to summarize racialand/or ethnic disparities in quality ofNICU care delivery. Health care isdelivered within a context of societal,institutional, and interpersonalracism that may contribute todisparate care and outcomes.
METHODS
The authors conducted a systematicreview of the literature in accordancewith the Preferred Reporting Itemsfor Systematic Reviews and Meta-Analyses guidelines.6 The searchstrategies and inclusion and exclusioncriteria were specified in advance anddocumented in a protocol.
We used Donabedian’s7 structure-process-outcome quality of careframework to review the literature onracial and/or ethnic disparity in NICUquality of care delivery. Measuringquality of care is nuanced and thisliterature cannot always isolatemeasures or disparities strictlyrelated to quality of neonatal care,
biological diversity, maternalcomorbidities, or a challengedsocioeconomic environment.Research in this area is observationaland open to interpretation. Indetermining which articles to includeor exclude, we relied on expertassessments of measures of quality8
and the principle that qualitymeasures should be malleable. Wesorted articles by structure-process-outcome according to the dominanttheme in the article and by groupingsimilar articles.
Data Sources
We searched Medline/PubMed,Scopus, Cumulative Index of Nursingand Allied Health, and Web of Scienceuntil March 6, 2018, using searchqueries organized around thefollowing key concepts: “neonatalintensive care units,” “racial or ethnicdisparities,” and “quality of care.” Thefull search strategy for the Medline/PubMed query, which also formed thebasis for the other database queries,can be found in SupplementalInformation. Additional articles werecollected on the basis ofrecommendations from experts in thefield and reviewing bibliographies ofrelevant articles.
Study Selection
According to the eligibility criteriaoutlined in our protocol, we screenedall English language articles retrievedand available in full text throughMarch 6, 2018, using the followinginclusion and exclusion criteria.
Inclusion criteria:
• Studies that reported data on thequality of NICU care inclusive of thefollowing:
○ process-of-care measures (eg,use of appropriateinterventions);
○ outcome measures insofar asthey are used as quality metrics(eg, morbidity or mortality wereused to indicate quality of care);
○ structural measures of care (eg,use of or access to health careservices insofar as this isindicative of quality);
○ patient evaluations of care (eg,patient satisfaction); or
○ direct observations of care; and
○ report data stratified by patientrace and/or ethnicity (eitherwithin or between NICUs,hospitals, or regions).
Exclusion criteria:
• Studies that reported the following:
○ only maternal or post-NICUdischarge measures of quality;
○ only outcomes that may notreflect quality of care (eg,morbidity or mortality rates notat the NICU level);
○ only data from a non-US setting,
○ data not stratified by race and/orethnicity,
○ non–English languagepublication, or
○ or nonhuman studies.
Data Extraction
Articles were divided into structure-process-outcome according to theirdominant theme, with 1 articlesummarized under both structureand process.9 For this review, wecategorize analyses of minorityserving hospitals under the structuredomain. Articles were furthercategorized thematically. Two authorsindependently assessed eligibility,extracted data, and cross-checkedresults, with disagreements resolvedby consensus. Information extractedfocused on racial and/or ethnicdisparities in quality of care andpotential mechanism(s) fordisparities. We did not performadditional bias assessment.
RESULTS
Figure 1 displays our search results.Of an initial pool of 566 potentiallyeligible records, 470 representedunique citations. After review of titles
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and abstracts, we excluded a further382 records. After examination of thefull texts of the remaining 88 records,we retained 36 records for thesystematic review. Five records wereadded based on expert suggestionand review of bibliographies ofrelevant articles for a total of 41selected for inclusion.
Structure
We identified 12 articles thatexamined the role of structure orhealth systems in racial and/or ethnicdisparities in quality of NICU care(Table 1).
Nursing Characteristics
The authors of 2 articles10,11
addressed disparities in NICU nursingcharacteristics and how they relatedto outcomes, both finding that highblack-serving hospitals deliveredlower quality of care. Lake et al10
found that infants with VLBW born inhigh black concentration hospitalshad worse outcomes as well as morenurse understaffing and poorerpractice environments. In addition,Lake et al11 surveyed NICU nurses in
4 US states to understand how nursestaffing and work environment affectsoutcomes. They found that thepatient-to-nurse ratio wassignificantly higher in high black-serving hospitals and NICUs in highblack-serving NICUs missed nearly50% more nursing care than those inlow black-serving NICUs.
Appropriate Setting
The authors of 2 studies looked atdisparities in birth in appropriatesettings,12,13 and the authors of 1study looked at the benefits of beingborn in an appropriate setting,14
often finding that mothers of colorbenefit in both scenarios. In a study ofAlabama VLBW births between 1988and 1990, Bronstein et al12 found thatmothers of color with early prenatalcare were more likely than whitemothers to give birth to infants withVLBW in hospitals with NICUs.Similarly, in a California study, Gouldet al13 found that black women areless likely to give birth to infants withVLBW in inappropriate settings thanwhite and Hispanic women.
Gortmaker et al14 asked whether thebenefit of NICU technology wasequally beneficial to black and whiteinfants with VLBW. They foundsignificant differences in survival bytype of hospital, with infants withVLBW born in hospitals with NICUsmore likely to survive. However, theresearchers found greater survivalrates for black infants compared withwhite infants at the same level ofhospital care. The authors suggestthat this indicates that black infantswith VLBW have better survival thanwhite infants in general, not thatthere is a differential in quality.
Geography
In 2 articles,15,16 researchersinvestigated the relationship betweengeography and racial disparities inquality of care; in both articles, it wasfound that proximity did not makea difference in terms of accessinga high-quality hospital15 or loweringneonatal mortality rate.16 Hebertet al15 found that black women wereless likely to deliver in top-tierhospitals and that top-tier hospitalswere less likely to be in blackwomen’s neighborhoods. Distance,however, did not contribute to theracial disparity in use of top-tierhospitals, in that black and whitewomen often bypassed theirneighborhood hospital. Usinga different approach, Featherstoneet al16 found no significantassociation between travel time todelivery hospital and neonatalmortality. However, they found thatblack infants experienced lower oddsof neonatal death overall.
Minority-Serving Hospitals
Researchers for 2 articles17,18 lookedat the relationship between theproportion of black or white infantswith VLBW in a hospital and itsneonatal mortality rate, finding thathospitals with more black infantswere of lower quality. Morales et al17
found that “minority-serving”hospitals (defined as hospitals where.35% of infants with VLBW that
FIGURE 1Replicable search results. CINAHL, Cumulative Index to Nursing and Allied Health Literature.
PEDIATRICS Volume 144, number 2, August 2019 3 by guest on December 27, 2020www.aappublications.org/newsDownloaded from
TABLE1System
aticReview
Structure
Variable,Author,
andReference
Demographicsof
Study
(IfAvailable)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RelativeRisk
orMeasuresof
Effect
(IfApplicable)
SuggestedMechanism
Nursing
characteristics
Lake
etal10
8252
infantswith
VLBW
Relationshipbetweennursing
characteristicsandhospital-level
disparities
inVLBW
outcom
es
Higher
infectionrates,higher
ratesof
dischargewithoutbreast
milk,m
ore
nurseunderstaffing,and
poorer
practiceenvironm
ents
inhospitals
with
ahigh
proportionof
black
patients(“high-black”)
compared
with
hospitalswith
alowproportion
(“low-black”);70%
ofblackinfants
with
VLBW
areborn
athigh-black
hospitals,sothesedisparities
stronglyaffectthem
.Black
infantsare
particularlydisadvantagedeven
inhigh-black
hospitalswhenitcomes
tobreastfeeding.Blackinfantsand
white
infantsno
different
within
hospitalsoverall.
aORof
nosocomialinfectionin
high-
blackversus
low:1.64.aORfor
dischargewithoutBM
high
versus
low:1.61.Differences
notsignificant
whencontrolling
fornursing
characteristics.Practice
Environm
ent(scaleof
1–4):high-
black2.95,low
-black
3.16,P
5.004.
Understaffing
(measuredinfraction
ofanurseperinfant
needed
tomeetguidelines):high-black
0.22,
low-black
0.14,P
5.004.
Nursingcharacteristicdifferences
likely
dueto
financialconstraintsandpoor
managem
ent.Nursing
characteristicslikelydriveinfection
anddischargewithoutbreast
milk.
Lake
etal11
Random
samplesurvey
oflicensednurses
in4
largeUS
states:1037
staffnurses
in134
NICUs.
Averagepatient
load,individual
nurses’patient
load,professional
nursingcharacteristics,nurse
workenvironm
ent,andnursing
care
missedon
thelast
shift.
Morecare
activities
aremissedin
hospitalsservingahigher
proportion
ofblackinfants(.
31%)than
inhospitalsthat
serveasm
aller
proportionof
blackinfants(,
11%).
Thisindicatesthatquality
ofcare
may
belower
inhigh-black
hospitals.
Nurses
inhigh-black
NICUsmissed
nearly50%
morecare
activities
than
thosein
low-black
NICUs
(average
1.51
vs1.05
activities
missedpershift,P
5.03).
Disparities
inmissedcare
werelikely
dueto
higher
patient-to-nurse
ratios
inhigh-black
hospitals.H
igh-black
hospitalsweremorelikelyto
have
larger
proportionof
Medicaid
patients,which
canlead
tofinancial
strain
andthereforefewer
staffing
resources.
Appropriate
setting
Bronsteinet
al12
Infantswith
VLBW
;1118
white
and1478
infants
ofcolor.
Deliveryin
hospitalswith
NICUs.
Mothers
ofcolorwith
earlyprenatal
care
werethegroupmostlikelyto
deliver
theirinfantswith
VLBW
inhospitalswith
NICUs.White
wom
enwith
Medicaidweremorelikelyto
betransferredbefore
birththan
white
wom
enwith
privateinsurance.
OR:1.353
(1.119–1.636)
formothers
ofcolorversus
white
mothers.O
R:1.733(1.316–2.283)
formothers
ofcolorwith
Medicaidandearly
prenatalcare
versus
whitemothers
with
noMedicaidandearlyprenatal
care.
Wom
enwith
earlyprenatal
care
are
likelyableto
contacttheircare
providerssooner
ifthey
gointolabor
prem
aturelyor
arepart
ofcare
system
swith
establishedreferral
relationships
forem
ergency
situations.Som
ehospitalsmay
selectivelyretain
privatelyinsured
wom
enforhigh-riskdeliveries,refer
less
Medicaid-insuredwom
ento
subspecialtyregional
centers.
Gouldet
al13
Data
from
1state
(analyzedby
region)
from
1989
to1993
of24
094live-born
infants
with
VLBW
.
Factorsassociated
with
likelihoodof
VLBW
birthat
aLevel1hospital
(hospitalw
ithouta
NICU
or24-hon-
callneonatologist)
10.5%
(24094)
infantswith
VLBW
were
delivered
inLevel1hospitals.
Significant
regional
variation:from
3.1%
to24.3%.The
odds
were
decreasedforAfricanAm
ericansand
SoutheastAsians
andincreasedin
Odds
ofinappropriatedeliverysite
ranged
from
0.37
to2.75
across
California’s
9geographicperinatal
regions.OR
forAfricanAm
ericans:
0.65.O
RforSoutheastAsians:0.54.
Common
toall3racial
ethnicgroups:
risksof
Level1VLBW
delivery
associated
with
(1)less
than
adequate
prenatal
care,(2)
livingin
azipcode
that
isonly50%–75%
urban,and(3)livingat
adistance
to
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TABLE1
Continued
Variable,Author,
andReference
Demographicsof
Study
(IfAvailable)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RelativeRisk
orMeasuresof
Effect
(IfApplicable)
SuggestedMechanism
Hispanicwom
enas
comparedwith
white
non-Hispanicwom
en.For
all
wom
en,lessthan
adequate
prenatal
care,livingin
a50%–75%
urbanzip
code,and
living.25
milesfrom
the
nearestNICU
significantlyincreased
theodds
ofVLBW
deliveryat
aLevel1
hospital.
ORforwhite
1.00.O
RforHispanic
1.16.
ahospitalwith
aNICU.H
owever,
regional
differences
intheodds
for
inappropriateVLBW
birthremained
afteradjustingforcontributingsocio-
demographicsandgeographical
risk
factors.Hispanicteenage
pregnancieswereat
particular
risk
ofinappropriatebirthsetting.
Gortmaker
etal14
Data
from
4states
for
1978
and1979
used
toestim
atesurvival
curves
forfirst24
hof
life.
Survival
byhospitalsetting(high-
technology
centersversus
urbanor
ruralcenters).
Among750–1000
ginfants:cumulative
probabilityof
survival
atLevelIII
center
was
∼0.63
amongwhite
infantsand∼0.70
amongblack
infants.Am
ong1000–1500
g:∼0.90
amongwhite
infantsand∼95
among
blackinfants(LevelIII).
Blackinfantshadbetter
access
tospecialized
services.InWashington
andTennessee,.50%
ofblack
infantswith
VLBW
wereborn
inspecialized
centers.Forallbirth
weightcategories,survivalduring
thefirst96
hwas
greateram
ong
blackthan
white
infantsat
the
samelevelofhospitalcare.Birthin
aLevelIIIcenter
conferredthe
highestsurvival
rates.
Birthin
aLevelIIIcenter
greatly
improves
infant
outcom
es.
Differentialaccess
tospecialized
LevelIIIcentersbetweenblack
infantsandwhiteinfantsmay
explain
thehigher
observed
survivalratesin
blackinfants.
Geography
Hebert
etal15
VLBW
deliveriesin
New
York
Cityfrom
1996
to2001
tonon-Hispanic
blackandnon-
Hispanicwhite
mothers.
Theroleof
geographicdistributionof
hospitalsin
theracial
disparity
intheuseof
top-tierhospitals(those
inthelowesttertile
ofhospitals
ranked
byratio
ofobserved
toexpected
deaths).
Blackmothers
less
likelyto
deliver
intop-tierhospitals(white5
44%,black
528%;P
,.001).Top-tierhospitals
less
likelyto
bein
blackmothers’
neighborhoods(white
540%,black
533%;P
,.001).Distance,how
ever,
didnotcontribute
tothedisparity
inuseof
top-tierhospitals:m
others
ofboth
racesoftenbypassed
their
neighborhood
hospital(black
562%
bypassed,w
hite
571%;P
,.001).
ORof
relativerisk
blackor
white
ofprobability
that
amotherof
aneonatewith
VLBW
used
atop-tier
hospital:0.6.
Theinfluenceof
geographyon
theuse
oftop-tierhospitalsformothers
ofneonates
with
VLBW
iscomplex.
Otherpersonal
andhospital
characteristics,notjust
distance
orgeography,also
influenced
hospital
usein
NewYork
City.R
esearchers
provideinsights
tothosewho
would
report
risk
adjusted
hospital
mortalityrankings
tofoster
top-tier
selection.However,improvingquality
atpoorlyperformingfacilitiescould
makegreaterimpact
than
encouragingchoice
ofbetter-
performinghospitals.
Featherstone
etal16
Thelinkedbirthand
deathrecordsof
singletoninfantswith
VLBW
born
between
2010
and2012
(n5
2030).
Impact
oftraveltim
efrom
maternal
residenceto
deliveryhospitalon
neonatal
mortalityrate.
Nosignificant
associationbetween
traveltim
eto
deliveryhospitaland
neonatalmortalityafteradjustingfor
confounders.1-wkincrease
inGA
and
non-Hispanicblackmothers
(versus
non-Hispanicwhite
mothers)were
associated
with
lower
odds
ofneonatal
death,whereas
non-
NICU
admission
atbirthwas
associated
with
increasedodds
ofdeath.
1-wkincrease
inGA
associated
with
lower
odds
ofmortality:(OR:
0.61);
non-Hispanicblackmothers
(OR:
0.68)associated
with
lower
death;
non-NICU
admission
atbirth(OR:
5.9)
increasedodds
ofdeath.
Ahigh
proportionof
neonatal
deaths
occurred
within
24hof
birth.
Underlying
causes
ofdeath,
particularlyin
thefirst24
h,arenot
sensitive
toaccess
tocare
butare
morecloselyalignedwith
other
maternal,neonatal,orhospital-level
factors.
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TABLE1
Continued
Variable,Author,
andReference
Demographicsof
Study
(IfAvailable)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RelativeRisk
orMeasuresof
Effect
(IfApplicable)
SuggestedMechanism
Minority-serving
hospitals
Morales
etal17
74050infantswith
VLBW
treatedby
332VON
hospitalsbetween
1995
and2000
Whether
thereisan
association
betweenproportionof
black
infantswith
VLBW
treatedat
ahospitalandneonatal
mortality
forblackandwhite
infantswith
VLBW
.“Minority-serving”definedas
.35%of
infantswith
VLBW
treated
wereblack;othercategories
were
,15%
and15%–35%.
Minority-serving
hospitalshad
significantlyhigher
risk-adjusted
neonatal
mortalityratesthan
,15%.
Differences
werenotexplainedby
either
hospitalor
treatm
ent
variables.
Risk-adjustedneonatal
mortalityrates
in.35%
blackhospitalscompared
with
,15%:w
hiteOR
:1.30,blackOR
:1.29,p
ooledOR
:1.28
Minority-serving
hospitalsmay
beprovidinglower
quality
ofcare
toinfantswith
VLBW
.Results
werenot
explainedby
otherhospital
characteristicslooked
atin
this
study(location,teaching
status,%
admissionscoveredby
Medicaid),
buttherecouldbe
other
characteristicsnotlooked
atin
this
studythat
might
have
aneffect.
Howellet
al18
11781infants500–1499
gin
NewYork
Cityborn
between1996
and
2001.
Risk-adjustedneonatalmortalityrates
foreach
NewYork
Cityhospitaland
racial
andethnicdistribution
amongthosehospitals.
White
infantswith
VLBW
morelikelyto
beborn
inlowestmortalitytertile
ofhospitals(49%
)comparedwith
black
infantswith
VLBW
(29%
).Estim
ated
thatifblackwom
endelivered
insame
hospitalsas
white
wom
en,black
VLBW
mortalityrateswould
bereducedby
6.7per1000
VLBW
births
ordisparity
would
bereducedby
34.5%.
——
Military
vscivilian
care
Kugler
etal19
Blackor
white
singleton
livebirths
inPierce
Countydelivered
between1982
and
1985.
Theeffect
ofsystem
ofcare
(military
care)on
differences
inlowbirth
weightandneonatal
mortality
betweenblackinfantsandwhite
infants.
(Note:notincludingfindings
onlow
birthweightfindings
becausenot
quality
ofcare.)Civilianblackinfants
hadapproximatelytwicetheneonatal
deathratesof
civilianwhite
infants.
Theneonatal
mortalityratesfor
military
blackinfants,however,did
notdiffersignificantlyfrom
either
groupof
white
infants.Disparity
did
notapplyto
birthweight,2500
g.
Civilianblackinfantsversus
civilian
white
infantscruderisk
ratio:2.33;
civilianblackinfantsversus
military
blackinfantscruderisk
ratio:3.08;
military
blackinfantsversus
military
white
infantscruderisk
ratio:1.04.
Military
care
appeared
tobe
associated
with
aprotectiveeffect
forneonatal
mortalityforblackinfants.Thiseffect
was
notdueto
differences
inbirth
weightdistributionor
tothequantity
ofprenatal
care
received.The
effect
was
mostprom
inentfornorm
alweightblackinfants,especiallyfor
thosefrom
lowincomecensus
tracts.
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were treated were black) hadsignificantly higher risk-adjustedneonatal mortality rates thanhospitals with ,15% black infants,and that these differences were notexplained by hospital or treatmentvariables. Similarly, Howell et al18
examined which hospitals black andwhite infants were most likely to beborn in. They found that white infantswere more likely to be born inhospitals in the lowest tertile ofmortality rates (49%) compared withblack infants with VLBW (29%) inNew York City hospitals. Theyestimated that if black women gavebirth in the same hospitals as whitewomen, black VLBW mortality rateswould be significantly reduced.
Military Versus Civilian Care
In looking at the influence of healthcare systems (military hospital versuscivilian hospital) on neonatalmortality, Kugler et al19 found thatmilitary care appeared to beassociated with a protective effect forneonatal mortality for black infants inPierce County, Washington. Theyfound that in civilian care, blackinfants had approximately twice theneonatal death rates of white infants,but that difference disappeared inmilitary care, suggesting a protectiveeffect of military care for blackinfants.
Composite Quality
We identified 2 articles9,20 in whichthe authors investigated multiplequality measures, sometimescombining them into an explicitcomposite measure. Both suggest thatinfants of color are vulnerable to low-quality NICU care. Profit et al9 usedBaby-MONITOR (a compositemeasure of NICU quality) to studydisparities within and between NICUswherein a higher score indicatesbetter quality of care. They foundsignificant variation both betweenand within NICUs. Although non-Hispanic white infants scored higheron measures of process, non-Hispanicblack infants scored higher onTA
BLE1
Continued
Variable,Author,
andReference
Demographicsof
Study
(IfAvailable)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RelativeRisk
orMeasuresof
Effect
(IfApplicable)
SuggestedMechanism
Composite
quality
Profitet
al9
18616infantswith
VLBW
in134CaliforniaNICUs
betweenJanuary1,
2010,and
December
31,2014.
Baby-MON
ITOR
score(a
compositeof9
processandoutcom
emeasuresof
quality).Foreach
NICU,a
risk-
adjusted
composite
andindividual
component
quality
scoreforeach
race
andethnicity.
Compositequality
scores
ranged
by5.26
standard
units
(range:2
2.30
to2.96).
Non-Hispanicwhite
infantshigher
onmeasuresof
processcomparedwith
non-Hispanicblackinfantsand
Hispanicinfants.Comparedwith
white
infants,non-Hispanicblack
infantsscored
higher
onmeasuresof
outcom
e;Hispanicinfantsscored
lower
on7of
the9Baby-MON
ITOR
subcom
ponents.
Differencebetweenhighestandlowest
performingNICUswas
large(5.2
standard
units).
Someof
thedisparity
createdby
inferior
performance
among
modifiablemeasuresof
process
rather
than
outcom
e,suggesting
acriticalrole
forQI
efforts.
Howellet
al20
7177
infants,GA
24–31
wk
(verypreterm)
Mortalityor
severe
neonatal
morbidity
Morbidity
andmortalityhigher
among
blackandHispanicthan
white
VPTBs.
Risk-adjustedmorbidityandmortality
rate
was
twiceas
high
forVPTBsin
hospitalsinthehighestm
orbidityand
mortalitytertile
than
thoseborn
inthelowesttertile
hospitals.Black
and
HispanicVPTBsweremorelikelyto
occurin
thehighestmorbidity
and
mortalityhospitalsthan
white.M
ost
ofthedisparity
canbe
attributed
todifferences
ininfant
health
risks,but
birthhospitalalso
playsasignificant
role.
Percentage
ofdisparity
explainedby
birthhospital:black-white
540%
(95%
CI,30%
–50%);Hispanic-white
30%
(95%
CI,10%
–49%).
Distance
tothehospital,insurance,
hospitalstructural
characteristics,
patterns
ofracial
segregation,
community
factors,physician
referral,riskperception,patient
choice,access,andthemanagem
ent
ofmedical
emergenciesduring
pregnancymay
allcontribute
toblackandHispanicwom
engiving
birthat
hospitalswith
higher
mortalityandmorbidityrates.
“African
American”and“black”areoftenused
interchangeablyintheliteraturereview
ed.Inthistable,weusethesamelanguage
asthearticlescited.aOR,adjusted
odds
ratio;BM,breastmilk;CI,confidenceinterval;OR,odds
ratio;VON
,Vermont
Oxford
Network;VPTB,verypreterm
birth;—
,not
applicable.
PEDIATRICS Volume 144, number 2, August 2019 7 by guest on December 27, 2020www.aappublications.org/newsDownloaded from
outcome measures. Overall, theauthors found that, “…as [NICU]quality scores rise, whites tend toperform better than AfricanAmericans. However, AfricanAmericans in high-performing NICUsoften fare better than AfricanAmericans in low-performing NICUs.”Howell et al20 examined differencesin neonatal morbidity and mortalityrates in very preterm infants by siteof delivery in New York Cityhospitals. The authors createda composite measure of mortality andmorbidity and found it to be higheramong black and Hispanic than whitevery preterm infants. The risk-adjusted morbidity and mortalityrates were twice as high for theseinfants in hospitals in the highestmorbidity and mortality tertile thanthose born in lowest tertile hospitals.Black and Hispanic very pretermbirths were more likely to occur inthe highest morbidity and mortalityhospitals. The authors20 found thatalthough differences in infant riskfactors accounted for a large portionof the disparity overall, birth hospitalstill accounted for 30% to 40% of theexplained disparity in outcomes forblack or Hispanic infants comparedwith white infants.
Processes
We identified 19 articles in whichdisparities in NICU care processeswere addressed (Table 2).
Breast Milk
Researchers for 8 articles9,21–26,38
addressed racial disparities in NICUbreast milk feeding (BMF), factorsimportant for successful BMF, use ofdonor human milk (DHM) in NICUs,or the effect of single family rooms onbreastfeeding. Many pointed todisparities that disadvantage blackinfants.
Researchers for 3 articles9,21,38
studied disparities in BMF atdischarge. Lee et al21 found thatCalifornia BMF rates were highest forwhite, lower for Hispanic, and lowest
for black infants. After separatingNICUs by quartile percentage of eachrace, Lee et al21 found that BMF rateswere higher for all races andethnicities in hospitals with morewhite mothers. When units werecompared, black infants benefited themost by being cared for in NICUs witha higher proportion of white infants.Lee et al’s21 findings are consistentwith those of Profit et al,9 whoinclude BMF within a composite NICUquality measure, finding that whiteinfants scored higher than otherracial and/or ethnic groups on BMF atdischarge across NICUs. Riley et al38
studied the effect of neighborhoodstructural factors on BMF at NICUdischarge for VLBW infants, findingthat these did not significantly impactBMF, but that maternal race and/orethnicity predicted BMF at dischargesuch that black race was associatedwith reduced likelihood of BMF atdischarge. They also found that unlikewhite mothers, there was a trend ofdecreased BMF at discharge for blackmothers without access to a car.
Researchers for 2 articles exploredfactors important for BMF in theNICU, in particular for black mothers.Using qualitative research, Cricco-Lizza22 found that black non-Hispanicmothers reported receiving limitedbreastfeeding education and supportduring pregnancy, childbirth, NICUstays, postpartum, and recovery inthe community. Fleurant et al23
looked at the association of socialfactors (eg, breastfeeding support,etc) with human milk feeding atdischarge. They found that theSupplemental Nutrition Program forWomen, Infants, and Children (WIC)program enrollment negativelypredicted (and maternal goal settingnear time of discharge positivelypredicted) BMF at discharge formothers of all races and ethnicities.Surprisingly, they found thatperceived breastfeeding support froman infant’s maternal grandmothernegatively predicted BMF atdischarge for black mothers.
Researchers for 2 studiesincorporated the use of DHM asa measure of quality, either seeking toidentify reasons associated withnonconsent for DHM24 or in assessingwhether demographic disparitiesexist in the use of mother’s own milkand DHM.25 Brownell et al24 foundthat nonwhite race was among thepredictors of nonconsent for DHM,and Boundy et al25 found that NICUsin postal codes with low percentagesof black residents had higher rates ofmother’s own milk use and of donormilk use.
Vohr et al26 compared infants caredfor in single family room NICUs tothose cared for in open bay NICUs.They found that, overall, infantsbenefitted from single family roomsthrough higher rates and volume ofbreast milk use and higher cognitiveand language scores, but nonwhiterace was associated with a decreasedeffect of this benefit.
High-risk Infant Follow-up Referrals
Researchers for 2 articles focused ondisparities in referrals for follow-upcare in infants with VLBW cared forin NICUs,27,28 showing disadvantagesfor black infants. We included theseinvestigations because referrals tofollow-up care should be initiated inthe NICU and reflect the highestquality of care. Barfield et al27 foundthat early intervention referrals werelower for infants of black mothers.Similarly, Hintz et al28 found thatblack and Hispanic infants were lesslikely to be referred for high-riskfollow-up than white infants.
Parental Satisfaction and FamilyExperience
Researchers for 2 recent studiesdocumented disparities in parentalsatisfaction or how familiesexperience NICU care,29,30 suggestingthat families of color may bevulnerable to worse care. Martinet al29 surveyed white and blackfamilies on their experiences andsatisfaction with NICU care and found
8 SIGURDSON et al by guest on December 27, 2020www.aappublications.org/newsDownloaded from
TABLE2System
aticReview
Process
Variable,Author,
andReference
Demographicsof
Study(If
Available)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RelativeRisk
orMeasuresof
Effect
(IfApplicable)
SuggestedMechanism
Breast
milk
Leeet
al21
90%
ofinfantsadmitted
into
Californian
NICUswith
birth
weightof
500–1500
gand
born
ator
transferredto
aCPQCCcenter
within
2dof
birthfrom
2006
to2008.
Anyam
ount
ofBM
Fat
timeof
discharge.Hospitalswere
dividedinto
quartiles
byhospitalpercentage
ofeach
race,and
BMFratesby
race
werecompared.
BMFfoundtobe
higher
forallracialand
ethnicgroups
inhospitalswith
morewhite
mothers.D
ifferences
wereless
pronounced
forHispanicmothers
than
for
blackmothers.African
Americanshadthelowest
ratesof
BMFwhencaredforin
hospitalswith
more
AfricanAm
ericans(43%
)versus
hospitalswith
fewer
AfricanAm
ericans(59%
,P5
.003).On
theother
hand,w
hitemothers
hadthelowestB
MFrates(49%
)in
hospitalswith
thefewestwhite
mothers.
With
risk
adjustment,white
mothers
weremorelikelyto
engage
inBM
Fwhenthere
weremorewhitemothers
atthat
hospital(oddsratio
1.15
for10%
increase
inwhite
mothers,95%
confidenceinterval
1.04–1.28).Blackmothers
wereless
likelyto
engage
inBM
Fwhenmoreblack
mothers
wereat
the
hospital(oddsratio
0.80
for
each
10%
increase
inblack
mothers,95%
confidence
interval
0.67–0.97).
Hospitalsservingmorepatientsof
colorwereless
likelyto
have
prem
atureinfantsfedbreast
milk
forallraces.Targetingsuch
hospitalsforQI
may
help
toimproveBM
Fratesoveralland
reduce
disparities.
Profitet
al9
18616infantswith
VLBW
in134
CaliforniaNICUsbetween
January1,2010,and
December31,2014.
Baby-MON
ITOR
score(a
composite
of9processand
outcom
emeasuresof
quality).Foreach
NICU,
arisk-adjustedcomposite
andindividual
component
quality
scoreforeach
race
andethnicity.
Compositequality
scores
ranged
by5.26
standard
units
(range
22.30
to2.96).Non-Hispanicwhite
infants
higher
onmeasuresof
processcomparedwith
non-
HispanicblackinfantsandHispanicinfants.
Comparedwith
white
infants,non-Hispanicblack
infantsscored
higher
onmeasuresof
outcom
e;Hispanicinfantsscored
lower
on7of
the9Baby-
MON
ITOR
subcom
ponents.
Differencebetweenhighest
andlowestperforming
NICUswas
large(5.2
standard
units).
Someof
thedisparity
createdby
inferior
performance
was
amongmodifiablemeasuresof
processrather
than
outcom
e,suggestingacriticalrole
forQI
efforts.
Rileyet
al38
410VLBW
infantsborn
between
February
2008
and2012
and
admitted
totheLevelIIINICU
atRush
UniversityMedical
Center
inChicago,Illinois.
HMfeedingat
dischargeas
mitigatedby
neighborhood
structural
factors.
InbivariateanalysisHM
feedingat
dischargewas
negativelycorrelated
with
neighborhood
structural
factorsincludingneighborhood
concentrated
disadvantage
(OR:
0.72;C
I:0.60–0.86),neighborhood
violentcrimerate
(OR:
0.93;CI:0.89–0.98),and
negativelycorrelated
with
patient
factorsincluding
blackrace
and/or
ethnicity
(OR:
0.41;C
I:0.24–0.70).
Inmultivariate
analysis,onlymaternalrace
and/or
ethnicity
(OR:
1.04;CI:1.00–1.09),WIC
eligibility,and
length
ofNICU
hospitalizationpredictedHM
feeding
atdischargefortheentirecohort.The
interaction
betweenaccess
toacarandrace
and/or
ethnicity
significantlydifferedbetweenblackandwhite
orAsianmothers,although
thepredictedprobabilityof
HMfeedingat
dischargewas
notsignificantly
affected
byaccess
toacarforanyracial
and/or
ethnicsubgroup.
Inmultivariate
analysis,
maternalrace
and/or
ethnicity
(OR:
1.04;C
I:1.00-
1.09)predictedHM
feeding
atdischargeforentire
cohort.
Socioeconomicstatus
affected
breastfeedingratesinallracial/
ethnicgroups,b
utdisproportionatelyaffected
blackmothers
toagreater
degree
than
white
orHispanic
mothers.
Cricco-Lizza
22130blacknon-Hispanicmothers
enrolledin
theNewYork
SpecialSupplemental
Audiotaped
interviewsandfield
noteswereanalyzed
for
mothers’descriptions
of
Foundlim
itedbreastfeedingeducationandsupport
during
pregnancy,childbirthstay
inNICU,
postpartum
,and
recovery
inthecommunity.They
N/A
Lack
oftrustingrelationships
(neglectingtheaffective
elem
ents
ofhealth
care).
PEDIATRICS Volume 144, number 2, August 2019 9 by guest on December 27, 2020www.aappublications.org/newsDownloaded from
TABLE2
Continued
Variable,Author,
andReference
Demographicsof
Study(If
Available)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RelativeRisk
orMeasuresof
Effect
(IfApplicable)
SuggestedMechanism
Nutrition
Program
forWIC
weregeneralinform
ants.
From
thisgroup,11
key
inform
ants
hadclosefollow-
upduring
pregnancyandthe
firstpostpartum
year.
infant-feedingeducationand
supportfrom
nurses
and
physicians.
also
expressedtrustor
distrust
concerns
and
varyingdegreesof
anxietyabouthowthey
were
treatedby
nurses
andphysicians.
Fleurant
etal23
362raciallydiversemothers
ofinfantswith
VLBW
.HM
feedingat
discharge.
Forall362mothers,W
ICnegativelypredictedHM
feedingat
dischargeandmaternalgoalneartim
eof
dischargepositivelypredictedHM
feedingat
discharge.Perceivedbreastfeedingsupportfrom
infant’smaternalgrandm
othernegativelypredicted
HMfeedingat
discharge.
Forallmothers:W
ICeligibility
(OR:
0.34;0.15–0.75;P
5.008),breastfeedingsupport
from
mothers’mother(OR:
0.45;0.26–0.79;P
5.005),
goal
ofanyHM
near
discharge(OR:
8.38;
3.42–20.53;P#
.001).
Stratified
byrace
and/or
ethnicity:“Forblack
mothers,support
from
the
mother’s
mother(OR0.27
[95%
CI0.11–0.68],P5
.006).
Goalof
HMat
dischargepredicting
HMfeedingconsistent
with
otherresearch.Surprised
byfindingthat
higher
maternal
grandm
othersupportpredicts
lower
BM.Suggestionthat
this
relatesto
maybe
theperception
ofsupport(ratherthan
actual
support)andthat
mothers
coparentingwith
theirow
nmothers
aremorelikelyto
experience
parentingstress.
Brow
nell
etal24
Mothers
ofinfantseligibleto
receivedonormilk
(#32
weeks’gestationor
#1800
g)born
betweenAugust
2010
and2015.
Odds
ofnonconsent.
Ofthe486mother-infant
dyadsfrom
thefirst5yofthe
donormilk
program,nonwhite
race
(aOR:1.69;95%
CI:1.04–2.76)andincreasing
GA(aOR:1.11;95%
CI:
1.03–1.21)independently
predictednonconsent.Each
year
theprogram
existed,therewas
a48%
reductionin
odds
ofnonconsent
(aOR:0.52;95%
CI:
0.43–0.62).Themostcommon
reason
givenfor
nonconsent
was
‘‘it’s
someone
else’smilk.’’
Nonw
hite
race
(aOR:1.69;95%
CI:1.04–2.76);increasing
GA(aOR:1.11;95%
CI:
1.03–1.21)independently
predictednonconsent.
Program
durationwas
associated
with
reducednonconsent
rates
andmay
reflectincreased
exposure
toinform
ationand
acceptance
ofdonormilk
use
amongNICU
staffandparents.
Despite
overallimprovem
ents
inconsentrates,race-specific
disparities
inratesof
nonconsent
fordonormilk
persistedafter5yof
thisdonor
milk
program.
Boundy
etal25
Data
from
CDC’s2015
Maternity
Practices
inInfant
Nutrition
andCare
survey,linkedtothe
2011–2015
USCensus
Bureau’sAm
erican
Community
Survey.
Theuseof
mother’s
ownmilk
anddonormilk
inhospitals
with
NICUsby
thepercentage
ofnon-Hispanicblack
residentsin
thehospital
postal
code
area,
categorizedas
beingabove
orbelowthenational
average(12.3%
).
Inpostal
codeswith
.12.3%blackresidents,48.9%of
hospitalsreported
usingmothers’ow
nmilk
in$75%ofinfantsintheNICU,and
38.0%reported
not
usingdonormilk,com
paredwith
63.8%and29.6%of
hospitals,respectively,in
postal
codeswith
#12.3%
blackresidents.
N/A
Differences
foundmay
berelated
tovariations
inhealth
care
personnelsupport,hospital
policiesandpractices,m
others’
know
ledgeandaccess
toinform
ation,andcommunity-
levelsupportforbreastfeeding.
Donormilk
usemight
also
beaffected
byhospitalp
roximity
tomilk
banks,stateregulations,
andhospitalpoliciesrelatedto
theprovisionof
donormilk
and
insurancereimbursem
ent.
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TABLE2
Continued
Variable,Author,
andReference
Demographicsof
Study(If
Available)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RelativeRisk
orMeasuresof
Effect
(IfApplicable)
SuggestedMechanism
Vohr
etal26
Infantsweighing#1250
gcared
forin
anopen-bay
NICU
(January
2007–August
2009)
(n5
394)
versus
thosein
aSFRNICU
(January
2010–December2011)(n
5297).
Human
milk
provisionat1,4wk
anddischarge,and4wk
volume(m
L/kg/d).Also,
18–24
moBayley
III.
Infantscaredforin
theSFRNICU
hadhigher
Bayley
IIIcognitive
andlanguage
scores,higherratesof
human
milk
provisionat
1and4wk,andhigher
human
milk
volumeat
4wk.TheSFRNICU
was
associated
with
a2.55-point
increase
inBayley
cognitive
scores
and3.70-point
increase
inlanguage
scores.Every
10mL/kg
perdincrease
ofhuman
milk
at4wkwas
associated
with
increasesin
Bayley
cognitive,language,andmotor
scores
(0.29,0.34,
and0.24,respectively).M
edicaidwas
associated
with
decreasedcognitive
andlanguage
scores,and
lowmaternaleducationandnonw
hite
race
with
decreasedlanguage
scores.
Nonw
hite
race
with
decreased
language
scores
(25.8).
Authorsdo
notcommenton
race
orethnicity
butnote
that
low
maternaleducation,poverty,and
insurancestatus
likelymean
less
abilityto
spendtim
ein
the
NICU
andprovidebreast
milk,
thus
leadingto
lower
Bayley
IIIcognitive
scores.
High-riskinfant
follow-up
referrals
Barfield
etal27
1233
infantswith
VLBW
(,1200
g)in
Massachusetts
born
January1998–June
2003
Ratesof
referral
andtim
eto
referral
byrace
and/or
ethnicity.
Blackinfantshadlowestreferral
rates,especiallyat
0–12
mo.12%
blackinfantsnotreferred
atall,
comparedwith
6.8%
overall.
aHRof
referral
ofblacknon-
Hispanicinfantscompared
with
white
non-Hispanic
infantswas
0.85.
Possiblethat
minority
families
are
less
confident
intheirabilityto
access
specialty
health
care
services,suchas
EI.Also
mentions
barriers
toaccess,
physicianmistrust,concerns
and/or
misunderstandings
regardingtreatm
ent,and
disparities
ininsurancestatus
(which
was
included
and
adjusted
forwhencalculated
aHR,
butmentionedin
discussion).
Hintzet
al28
CPQCCinfants,1500
g,2010–2011
High-riskinfant
follow-up
referral
rates.
Lower
odds
ofreferral
forinfantswith
maternalrace
Hispanicor
AfricanAm
erican
versus
white.
aORcomparedwith
white:
AfricanAm
erican:0.58,
Hispanic:0.65.
Previous
research
haspointedto
issues
ofnoncom
plianceand
lackingsupportsystem
s;in
unadjusted
analyses,hospitals
servinghighestproportionof
AfricanAm
erican
infantshave
lower
referral
ratesoverall.
PEDIATRICS Volume 144, number 2, August 2019 11 by guest on December 27, 2020www.aappublications.org/newsDownloaded from
TABLE2
Continued
Variable,Author,
andReference
Demographicsof
Study(If
Available)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RelativeRisk
orMeasuresof
Effect
(IfApplicable)
SuggestedMechanism
Parental
satisfaction
andfamily
experience
Martin
etal29
Self-reportsfrom
non-Hispanic
blackandnon-Hispanicwhite
participants
who
hadan
infant
born
ataGA
#35
wk
orbirthwt,2000
g,presentingwithin
2moafter
NICU
dischargeto
any1of
30Children’sHospitalof
Philadelphiaprimarycare
centersbetweenJanuary1,
2010,and
January1,2013.
Parental
reported
trust,
communicationstyle,
expectations
ofthehealth
care
system
,and
satisfaction
with
theirphysicianandthe
NICU
course.Collected
parental
data
included
sex,
age,em
ployment,education,
homeow
nership,ethnicity,
race,m
aritalstatus,
householdresident
inform
ation,andincome.
Although
morecommentingparentswerewhite
(62%
)than
black(38%
),blackparent
comments
were
morenegative(58%
negativevs
42%
positive)
comparedwith
white
parent
comments
(33%
negativevs
67%
positive).The
nurse-parent
relationshipanddistinct
positiveandnegative
nursingbehaviorsareimportantfactorsaffecting
parental
satisfactionwith
NICU
care.B
lack
parents
weremostdissatisfied
with
nursingsupport,
wantingcompassionate
andrespectfu
lcommunicationandnurses
that
wereattentiveto
theirchildren.White
parentsweremostdissatisfied
with
inconsistent
nursingcare
andlack
ofinform
ativeexchanges,wantingeducationabout
theirchild’sshort-andlong-term
needs.Both
groups
describedachaotic
NICU
environm
entwith
high
nursingturnover.
N/A
Blackpatientsareless
likelyto
report
satisfactionwith
health
care,p
ossiblystem
mingfrom
differences
inprovider
communicationstyles,clinician’s
attitudes,m
edical
mistrust,and
perceivedracism
.Provider
uncertainty,biases,and
stereotyping
may
also
contributeto
unequaltreatment.
Sigurdson
etal30
Attendeesat
the2016
Verm
ont
Oxford
NetworkQuality
Congress
composedof
providers(nurses,
physicians,and
otherclinical
specialists)andNICU
family
advocates.
Open-ended
survey
ofaccounts
ofdisparatecare.
Studygathered
324accounts
ofdisparatecare,
majority
describedperceivedworse
care
offamilies,
notstrictlyinfants.Accounts
describedworse
care
basedon
intersectingfactorsof,eg,language,
culture
orethnicity,race,etc.Respondents
describedfamilies
receivingneglectfu
lcare,
judgmentalcare,and
system
icbarriers
tocare.
N/A
Adverseconsequences
ofdisparate
care
forinfantsmediated
throughadverseinteractions
with
families
moreso
than
throughdifferences
incare
toinfant.Socialinequalitiesshape
thecontentandtone
ofhealth
care
encounters
such
that
families
receiveworse
care
basedon
intersectingfactors.
Shared
parent-
provider
decision-
making
VanMcCrary
etal31
Twocasesin
aNewYork
City
tertiary
care
unit.
Nonm
edical
barriers
that
impede
decision-makingin
theNICU.
ManyNICUsarenotequipped
todealwith
complicated
culturalandlinguistic
barriers
that
preventthem
from
communicatingeffectivelywith
theirpatients.
N/A
Forboth
families
ofcolorin
these
case
studies,areinforcingcycleof
disapprovalhad
form
ed.Each
family
made,or
hadpreviously
made,decisionsthattheNICU
staff
didnotagreewith,sothestaff
implicitlyresented
thefamily.In
both
cases,care
decisionswere
influenced
bysocialandcultural
factorsthat
weremisunderstood
byNICU
medicalstaff.
12 SIGURDSON et al by guest on December 27, 2020www.aappublications.org/newsDownloaded from
TABLE2
Continued
Variable,Author,
andReference
Demographicsof
Study(If
Available)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RelativeRisk
orMeasuresof
Effect
(IfApplicable)
SuggestedMechanism
Tucker
Edmonds
etal32
Periviableinfants(23.0–24.6wk)
inCalifornia,Missouri,and
Pennsylvania,1995–2005.
Resuscitationof
periviable
infants.
Blackrace
apredictorforneonatal
intubation,
even
whencontrolling
forclustering
atthedelivery
hospitallevel.
aORforintubationof
black
infantscomparedwith
white:1.25.
Likelydueto
differences
inpatient
preferences(eg,religious
beliefs,culturalpreferences);
hospital-levelpractices
orresourcescouldalso
beacontributingfactor.
Kangaroo
care
Hendricks-
Muñoz
etal33
42nurses
and143mothers
at2
NewYork
Cityhospitals.
Maternalandprovider
perspectives
onKM
Cand
MCP.
Mothers
ofcolorperceivedthat
they
received
less
educationandaccess
toKM
C;nurses
ofcolorwere
moresupportiveof
MCP
andKM
C.
61%
ofmothers
ofcolor
stronglyidentified
that
access
toKM
Chadbeen
limitedto
them
compared
with
39%
ofwhite
mothers;
77%
ofwhite
mothers
comparedwith
only50%
ofmothers
ofcolorstrongly
perceivedthat
nurses
were
supportivein
helpingthem
provideKM
Cfortheirinfant;
ORof
nurses
ofcolor
encouragingparent
presence
comparedwith
white:2.8.
Culturalandlinguistic
differences
leadingto
communication
difficulties.
Surfactant
and
RDS
Hamvas
etal34
Infantswith
VLBW
born
1987–1989
and1991–1992
inSaintLouisarea;1563infants
intotal,315deaths.
Effectsof
surfactant
approval
onneonatalmortalityam
ong
blackandwhite
infants.
Neonatal
mortalitydecreasedmoreforwhite
than
blackinfantsaftersurfactant
was
approved;after
approval,w
hite
VLBW
mortalitydropped41%
and
VLBW
mortalityforblackinfantsdidnotchange.
Relativerisk
ofdeatham
ong
blacknewbornswith
VLBW
comparedwith
white,
1987–1989:0.7.Increased
to1.3in
1991–1992.
Larger
portionof
neonatal
mortalityin
white
neonates
was
attributed
toRD
S,so
introductionof
surfactant
had
alarger
effect;RDS
moreprevalent
amongwhiteinfantsbecausefetal
pulmonarysurfactant
matures
moreslow
lyinwhiteinfants.
Ranganathan
etal35
44712AfricanAm
erican
infants
and73
942non-Hispanic
white
infants.
Effectsof
surfactant
approval
onneonatalmortalityam
ong
blackandnon-Hispanicwhite
infantswith
VLBW
.
Introductionofsurfactant
therapyin1990
improved
the
outcom
esforwhite
infantswith
VLBW
morethan
black.No
differencebetweenAfricanAm
erican
and
non-Hispanicwhite
inrate
ofdeclineforall
categories
ofmortalitybetween1985
and1988;
DifferencebetweenAfricanAm
erican
andnon-
Hispanicwhite
inrate
ofdeclineforallexcept
nonrespiratory
neonatal
between1988
and1991.
1988–1991:O
ddsof
neonatal
deathfrom
RDSdeclined
34%
innon-Hispanicwhite
infantsandonly16%
inAfricanAm
erican
infants
(P,
.01);oddsof
death
from
allrespiratorycauses
declined
41%
innon-
Hispanicwhite
infantsand
22%
inAfricanAm
erican
infants(P
,.01).
Differentialefficacy
ofsurfactant
onnon-Hispanicwhite
and
AfricanAm
erican
infantswith
VLBW
.Lungs
ofAfricanAm
erican
fetusesmaturemorerapidly
andbegintoproducepulmonary
surfactant
earlier;therefore,
exogenoussurfactant
may
have
fewer
additionalbenefits;
AfricanAm
erican
infantswith
VLBW
may
also
respondless
favorablythan
non-Hispanic
white
infantsof
sameseverity.
PEDIATRICS Volume 144, number 2, August 2019 13 by guest on December 27, 2020www.aappublications.org/newsDownloaded from
that black families were mostdissatisfied with nursing support,lack of compassionate and respectfulcommunication, and less attentivecare of their infants, whereas whiteparents were most dissatisfied withinconsistent nursing care and lack ofinformative exchanges, wantingeducation about their infants’ short-and long-term needs.
Sigurdson et al30 reported onaccounts of disparate care fromproviders and parent advocates viaopen-ended survey. Accountsdescribed disparities related tooverlapping factors (language, cultureor ethnicity, race, immigration statusor nationality, sexual orientation orfamily status, gender, or disability)with race and ethnicity being animportant dimension. The authorsidentified 3 types of disparate care:neglectful care, judgmental care, orsystemic barriers to care, allreflecting suboptimal family-centered care.
Joint Parent-Provider Decision-making
Researchers for 2 articles addressedracial and/or ethnic differences indecision-making.31,32 Van McCraryet al31 reported on 2 cases where caredecisions were influenced by socialand cultural factors that weremisunderstood by NICU medical staffand families. They offered 2 examplesof families who wished for aggressivetreatment when the staff felt the careplan was not appropriate given theburdens of treatment combined withdire prognosis.
Tucker Edmonds et al32 studied racialand/or ethnic differences in use ofintubation for periviable infants,finding black race and/or ethnicity tobe significantly associated withincreased neonatal intubation.
Kangaroo Care
Hendricks-Muñoz et al’s33 survey ofneonatal nurses and NICU mothersrevealed that mothers valuedkangaroo care higher than nurses. Inaddition, more mothers of colorTA
BLE2
Continued
Variable,Author,
andReference
Demographicsof
Study(If
Available)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RelativeRisk
orMeasuresof
Effect
(IfApplicable)
SuggestedMechanism
Frisbieet
al36
AllUS
infantsborn
1989–1990
(5407166)
and1995–1998
(10809746).
Black-white
disparity
ininfant
mortalitydueto
RDSand
othercauses.
Disparity
inRD
Smortalitybetweenblackandwhite
infantsincreasedafterintroductionof
surfactant.
Absolute
declines
inmortalitygreaterforwhite
infantsthan
blackinfantsam
ongLBWinfantsafter
theintroductionof
surfactant.B
lack
infantshad
arelativesurvival
advantagein
presurfactantera;
thisbecameasurvivaldisadvantage
postsurfactant.
Infant
mortalitydueto
RDSin
blackinfants(versuswhite
infants):1989–1990,O
R5
0.832.1995–1998,O
R5
1.114.
Social
inequalityanddifferential
access
tointerventionbetween
blackandwhite
infants.
Howellet
al37
AllUS
infantsborn
1989–1990
(5407166)
and1995–1998
(10809746).
Black-white
disparity
ininfant
mortalitydueto
RDSand
othercauses.
Disparity
inRD
Smortalitybetweenblackandwhite
infantsincreasedafterintroductionof
surfactant.
Absolute
declines
inmortalitygreaterforwhites
than
blacks
amongLBWinfantsafterthe
introductionof
surfactant.B
lack
infantshad
arelativesurvival
advantagein
presurfactantera;
thisbecameasurvivaldisadvantage
postsurfactant.
Infant
mortalitydueto
RDSin
blackinfants(versuswhite
infants):1989–1990,O
R5
0.832.1995–1998,O
R5
1.114.
Social
inequalityanddifferential
access
tointerventionbetween
blackandwhite
infants.
“African
American”and“black”areoftenused
interchangeablyintheliteraturereview
ed.Inthistable,weusethesamelanguage
asthearticlescited.aHR,adjusted
hazard
ratio;aOR,adjustedodds
ratio;BM,breastm
ilk;BMF,breastmilk
feeding;
CDC,
CentersforDiseaseControlandPrevention;
CI,confidenceinterval;CPQCC,
CaliforniaPerinatalQuality
Care
Collaborative;EI,earlyintervention;
HM,human
milk;KM
C,kangaroo
mothercare;LBW
,lowbirthweight;MCP,maternalcare
partnerships;N
/A,not
available;OR,oddsratio;S
FR,singlefamily
room
.
14 SIGURDSON et al by guest on December 27, 2020www.aappublications.org/newsDownloaded from
reported being discouraged fromkangaroo care than white mothers.Among nurse respondents, nurses ofcolor and foreign-born nurses weremore likely to encourage maternalcare partnerships and kangaroo care.
Surfactant and Respiratory DistressSyndrome
Researchers for 2 studies examinedracial and/or ethnic disparities inoutcomes for infants with VLBW afterthe introduction of surfactant therapy.Hamvas et al34 found that aftersurfactant therapy for respiratorydistress syndrome (RDS) becamegenerally available, neonatalmortality improved more for whitethan black infants, but thesedifferences were explained by thehigher prevalence of RDS amongwhite infants. Ranganathan et al35
reported similar results andhypothesized differential efficacy ofsurfactant on non-Hispanic white andAfrican American infants owing tomore rapid lung maturation andsurfactant production among AfricanAmerican fetuses.
The authors of 1 article lookedspecifically at the disparity inmortality due to RDS between blackand white infants. Frisbie et al36
discovered that disparity increased inthe years after surfactant wasapproved by the US Food and DrugAdministration, indicating that thisnew therapy benefitted white infantswith RDS more than black infantswith RDS. According to this study,black infants had a relative RDSsurvival advantage in thepresurfactant era and a survivaldisadvantage after the introduction ofsurfactant.
In 1 article, researchers explicitlyinvestigated disparities in theadministration of surfactant itself. In2010, in 3 New York hospitals,Howell et al37 found that clinicianswere falling short ofrecommendations for surfactantoverall, but white infants were morelikely to get surfactant treatment than
their black or Hispanic and Latinocounterparts. However, when Hamvaset al34 looked at the same question,they did not find racial and/or ethnicdisparities in surfactant use.
Outcomes
We identified 11 articles thatexamined racial and/or ethnicdisparities in outcomes potentiallydue to differences in quality of caredelivery (Table 3).
Intraventricular Hemorrhage
One article39 examinedintraventricular hemorrhage (IVH)-related mortality, finding that blackinfants had a twofold greater risk ofIVH-related mortality compared withwhite infants, positinga pathophysiological predisposition inblack infants to IVH.
Necrotizing Enterocolitis and IntestinalFailure
Two articles were focused onconditions of the gastrointestinaltract: necrotizing enterocolitis(NEC)40 and survival with intestinalfailure.41 Both revealed disparity thatdisadvantaged infants of color. Guneret al40 noted that Hispanic infantswith NEC were less likely to survivethan non-Hispanic infants, but blackand white infants with NEC hadsimilar survival rates. Analyzing dataon infants who received parenteralnutrition for.60 days, Squires et al41
found that infants of color were lesslikely to receive intestinal transplantby 48 months after the criteria fortransplant was met and were morelikely to die without transplants.
Overall Morbidity or Mortality
Three articles were focused onoverall morbidity or mortality,revealing contradictory trends. In 2articles,42,43 the researchers indicateda disadvantage for infants of color.Jacob et al42 found that AlaskanNative infants had higher rates ofNEC, retinopathy of prematurity(ROP), and chronic lung diseasecompared with non-Native infants.
Pont and Carter43 found a significantdisparity in mortality amongextremely low birth weight infants(,750 g) who died within the first24 hours after birth. When comparing2 different time periods, 1995–1999and 2000–2005, Pont and Carter43
noted that black and Hispanicmortality increased, whereas the rateamong white infants decreased.However, Townsel et al44 noted thatamong very preterm infants (,28weeks’ gestational age [GA]), blackinfants had lower in-hospitalmortality than white infants. Blackand multiracial infants also had lowerrisk of RDS, and multiracial infantshad a lower risk of ROP.
Other Specific Outcomes
Of the 5 articles in this category, 2revealed a disparity that advantagedwhite infants over infants of otherracial and ethnic groups, and 3revealed race and/or ethnicity to notbe predictive of poor outcomes. Collinset al45 found that infant mortality dueto congenital heart disease was higherfor African American than non-Hispanicwhite infants, and Shin et al46 notedsignificant improvement from 1983 to2002 in 1-year survival rates for whiteand Hispanic patients with spina bifidabut not for black infants. Oyetunjiet al,47 however, found that race orethnicity was not an independentpredictor of mortality for infants onextracorporeal membrane oxygenation(ECMO). Similarly, Morris et al48 notedthat race was not a significant predictorof rehospitalization for extremely lowbirth weight. In addition, Collaco et al49
examined whether disparities in careexisted for major NICU therapydecisions, finding that race and/orethnicity did not affect the prescriptionof gastrostomy tubes, supplementaloxygen, or length of initial stay inthe NICU.
DISCUSSION
In this review, we providea comprehensive summary of theliterature in this area and suggest that
PEDIATRICS Volume 144, number 2, August 2019 15 by guest on December 27, 2020www.aappublications.org/newsDownloaded from
TABLE3System
aticReview
Outcom
e
Variable,
Author,and
Reference
Demographicsof
Study(If
Available)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RRor
Measuresof
Effect
(IfApplicable)
SuggestedMechanism
IVH Qu
reshi
etal39
3249
neonates
and
infantswith
IVH-
related
mortalities.
IVH-relatedmortality.
Incidenceratesof
IVHwerehigher
among
African-Am
erican
infantsthan
white
infants.AfricanAm
erican
infantshad
atwofoldhigher
risk
ofIVHmortality
comparedwith
whiteinfants.Significant
increase
inincidenceover
thestudy
period
forwhite
butnotAfrican
American
infants.
RRof
IVHmortalityforAfricanAm
erican
infantscomparedwith
white:2.0.
Higher
prevalence
ofrespiratorydiseases,
LBWs,andpreterm
deliveriesforAfrican
American
infants.Pathophysiological
characteristicsthat
may
predispose
AfricanAm
erican
infantsto
IVHmay
also
exist.
NECand/or
intestinal
failure
Guneret
al40
3328
infantswith
NEC.
Factorsthat
predictNEC-related
outcom
edisparities.
Overallmortalityforinfantswith
NECwas
12.5%.M
aleandHispanicinfantsless
likelyto
survive.Blackandwhiteinfants
have
similarsurvival
rates.
Odds
ratio
ofmortalityforHispanic
comparedwith
others:1.44(after
adjustmentforBW
).
None
Squires
etal41
272infants(,
12mo)
receiving
parenteral
nutrition
for601
d.
Survival
with
intestinal
failure
andlikelihoodof
receivingan
ITx.
Childrenofcolormorelikelyto
diewithout
ITxandless
likelytoreceiveITxby
48mo
aftercriteriamet.
CIPfordeathwithoutITx:white:0.16,
nonw
hite:0.40.CIPforITx:white:0.31,
nonw
hite:0.07.
Lower
ratesof
breast
feedingandhigher
ratesof
bloodstream
infections
among
blackinfantscouldcontribute,but
the
data
used
here
didnotshow
significant
differences
inhuman
milk
exposure
orsepsis.
Overall
morbidity
ormortality
Jacobet
al42
137Nativeand
469non-Native
infantswith
LBW.
BW-specificdifferences
inneonatal
morbiditiesfor
Alaska
Natives
comparedwith
non-Natives.
MoreNEC,moresevere
ROP,andmoreBPD
amongNativeinfantscomparedwith
non-Native.Forinfants1500–2499
gthat
needed
ventilatory
assistance,there
was
moreIVHoverall,moresevere
IVH,
and
moreacquired
sepsisam
ongNative
infants.
Allstudy
infants,Nativeversus
non-Native-
NEC:13%
vs4.9%
,ROP:12%
vs4.6%
,BPD:
49%
vs34%.Infants
1500–2499
gwith
ventilatory
assistance,N
ativevs
non-Native-IVH:19%
vs7.4%
,severeIVH:
9.5%
vs0.9%
,sepsis:7.1%
vs1.7%
.
Differences
may
bedueto
differences
inaccess
toLevelIIIperinatalcare
and
intrapartum
care.
Pont
and
Carter
43138infants,750g
who
died
within
first24
hof
life.
Characteristicsof
E-ELBW
-NS.
MoreblackandHispanicE-ELBW
-NSin
2000–2005
comparedwith
1995–1999;
increase
inblackinfantswas
not
mirroredby
totalNICU
admissionsor
NICU
admissions,750g.
BlackE-ELBW
-NSfrom
firstto
second
epoch:14.0%to
38.8%;H
ispanic:1.8%
to4.9%
;white:84.2%
to54.3%.
May
bedueto
confoundingvariables(such
asmaternalchorioam
nionitis)
that
this
samplesize
was
toosm
allto
determ
ine;
thereareknow
ndisparities
inoverall
IMR.
16 SIGURDSON et al by guest on December 27, 2020www.aappublications.org/newsDownloaded from
TABLE3
Continued
Variable,
Author,and
Reference
Demographicsof
Study(If
Available)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RRor
Measuresof
Effect
(IfApplicable)
SuggestedMechanism
Townsel
etal44
4802
LevelIIINICU
admits,G
A,37
wk.
IHM,R
DS,IVH,N
EC,and
ROP,
comparedby
race
and/or
ethnicity.
Nooveralldifferences
inIHM.For
very
preterm
infants(,
28wkGA),black
infantshadlower
IHM
than
white
infants.Comparedwith
white
infants
afterrisk-adjustm
ent,blackand
multiracialinfantshadlower
risk
ofRD
S,Hispanicinfantshadhigher
risk,
andmultiracialinfantshadlower
risk
ofRO
P.
ROP,Hispanicversus
white:aOR
51.70.
ROP,multiracialversus
white:aOR
50.45.R
DS,black
versus
white:aOR
50.57.R
DS,m
ultiracialversus
white:aOR
50.67.IHM
,black
versus
white:
unadjusted
OR5
0.74.
Differences
inretinal
pigm
entationmay
beprotectiveagainstRO
Pformultiracial
infants,especiallyiftheinfantsin
this
samplehave
ahigher
concentrationof
Africanancestry.
Other
Collins
etal45
3684569NH
Wand
782452African
American
term
infants.
IMRdueto
CHD.
IMRdueto
CHDwas
higher
forAfrican
American
than
non-Hispanicwhite
infants.Disparity
was
even
greaterin
thepostneonatal
period.
RRoffirstyear
mortality,AfricanAm
erican
versus
non-Hispanicwhite
mothers
51.36.Postneonatalperiod
RR5
1.53,
neonatal
51.20
(not
significantly
different).
Individual
levelrisk
factors(eg,greater
exposure
tostressorsand/or
toxins
orlack
ofaccess
toquality
health
care
due
tolivingin
animpoverished
area
inAfricanAm
erican
population)
may
explain
PNMRdisparity;h
owever,adjustingfor
maternaldemographicrisk
only
minimallyweakens
theassociation.
Shin
etal46
5165
infantswith
spinabifida.
Survival
with
spinabifida
at1,5,
and20
y.Significant
improvem
entin
1-ysurvival
between1983
and2002
forwhite
and
Hispanicinfantsbutnotblackinfants.
Survival
probabilityhighestforwhite,
then
Hispanic,thenblackinfants.
Survival
forblackinfantsworse
than
white
infantsof
norm
albirthwt,worse
forHispanicthan
whiteinfantswith
LBW.
Change
in1-ysurvival,1983–2002:w
hite
infants:87.9%–95.9%;H
ispanicinfants:
88.3%–92.6%;b
lack
infants:
79.1%–87.5%
(trend
notstatistically
significant);norm
alBW
mortalityfor
blackversus
white,aHR
at1y5
2.1,at
8y5
1.9;LBWmortalityforHispanic
versus
whiteinfants:4.2,aHRat
1mo5
6.0,at
1y5
4.2,at
8y5
3.7.
Possiblybarriers
inaccess
toquality
health
care.
Oyetunji
etal47
827neonates
ECMOoutcom
esEthnicminorities
wereoverrepresentedin
ECMOpopulation,butrace
and/or
ethnicity
was
notamajor
independent
predictorof
mortalityon
ECMO;ratesof
ECMOuseam
ongAfricanAm
erican
and
Hispanicinfantshasincreasedfaster
than
theincrease
inpopulation,
whereas
ECMOam
ongwhite
infantshas
decreased.
RRnotreported.
Moreethnicminority
infantshave
severe
diagnosesthat
requireECMO;may
bedue
tolower
SESandresulting
inadequate
prenatal
care.
PEDIATRICS Volume 144, number 2, August 2019 17 by guest on December 27, 2020www.aappublications.org/newsDownloaded from
disparities in NICU quality of careexist at all levels (structure, process,outcome) and generallydisadvantage infants of color, withsome areas of exception.14,19,34,35,44
Two primary themes driving thesedisparities emerged. First, infants ofcolor, especially black and Hispanicinfants, are more likely to receivecare in quality-challenged hospitals.Second, disparities also exist withinNICUs. Although some overlapexists, strategies to addressdisparities may differ.
The theme of worse care in minority-serving hospitals recurs throughoutthis review.* Although these findingscould be secondary to otherconfounders such as socioeconomicdifferences in influencing disparateoutcomes,39–43,45,46 we also foundracial and/or ethnic disparitiesacross processes9,21,22,24,27–31,33,37
that disadvantage infants of color.This indicates that disparities may beunder the control of providers andamenable to improvement by usingavailable QI tools. Minority-servinghospitals are often underresourced,may lack hospital or system-wide QIinfrastructure, and uncommonlyparticipate in collaborative QI effortsas offered, for example, through theCalifornia Perinatal Quality CareCollaborative50,51 or the VermontOxford Network.52 Theseorganizations have a role to play inorganizing and testing such efforts,potentially in partnership andfunding from governmental agenciesat the federal and state level. Lionand Raphael53 suggest that an idealQI initiative would have an amplifiedeffect on the populationsexperiencing worse quality andwould engage community resourcessuch as frontline providers andcommunity members committed toimproving the care of disadvantagedpopulations. We believe that effortsto specifically target improvementamong the most challenged hospitals
TABLE3
Continued
Variable,
Author,and
Reference
Demographicsof
Study(If
Available)
Outcom
e(s)
ofInterest
Summaryof
MainFindings
RRor
Measuresof
Effect
(IfApplicable)
SuggestedMechanism
Morris
etal48
2446
ELBW
infants
Rehospitalizationbefore
18mo
correctedage(age
from
expected
duedate)andcauses
ofrehospitalization.
Race
was
notasignificant
predictorfor
rehospitalizationoverall.White
infants
weremorelikelytobe
rehospitalized
for
grow
thandnutrition
than
blackinfants.
ORof
rehospitalizationforgrow
thand
nutrition
forwhite
versus
blackinfants:
2.2.
Differencein
parental
expectations
for
grow
th;physician
bias
inreferral
for
rehospitalization.
Collaco
etal49
135patientswith
chroniclung
diseaseof
prem
aturity.
Risk
factorsforuseof
major
therapies(wedidnotinclude
findings
onrespiratory
morbiditiesbecausethey
were
long-term
outcom
es).
Noracialor
ethnicdisparity
foundinmajor
treatm
entdecisions(prescriptionof
homeoxygen,gastrostomytubes,or
initial
length
ofstay).
N/A
Diseaseseveritymay
outweigh
anyother
factors;disparities
may
besubtle;
confoundingfactorsmay
reduce
effectsof
racial
and/or
ethnicfactors.
“African
American”and“black”areoftenused
interchangeablyintheliteraturereview
ed.Inthistable,weusethesamelanguage
asthearticlescited.aHR,adjusted
hazard
ratio;aOR,adjustedodds
ratio;BPD,bronchopulmonarydysplasia;BW
,birthweight;CHD,congenitalheartdisease;CIP,cumulativeincidenceprobability;E-ELBW-NS,earlyextrem
elylowbirthweightnonsurvivors;IHM
,in-hospitalm
ortality;IMR,infant
mortalityrate;ITx,intestinaltransplant;LBW
,low
birthweight;N/A,
notavailable;PNMR,
perinatalmortalityrate;R
R,relativerisk;S
ES,socioeconom
icstatus.
* Refs 9–11,15,17,18,20,21,43,45.
18 SIGURDSON et al by guest on December 27, 2020www.aappublications.org/newsDownloaded from
that serve affected communities holdpromise for reducing disparity.54
Strategies for addressing withinNICU disparities may require thedevelopment of new measures. Manykey aspects of NICU care quality arecurrently not systematicallymeasured but are nonethelessimportant. For example, family-centered care is not currentlyroutinely measured andsystematized across statewide ornationwide NICU data repositories.We are currently developingmeasures for family-centered care inthe NICU that can be standardizedacross NICUs that are meaningful toconsulted minority families and wehope to be sensitive to disparities.30
We hope these efforts will open upnew paths for improvement in familyexperience and quality of care for allfamilies, much in the same way asrecent efforts in assessing andimproving maternity care havedone.55
The term “disparities” is usedthroughout this article; however, wesuggest that this terminology risksnaturalizing racial and/or ethnicdifferences rather than provokingaction. That is, identifying racialdisparities runs the risk of reinforcingthe status quo56,57 and may lead toseeing differences as “natural” andnot amenable to change. For instance,differences can be naturalizedthrough racially biasedpreconceptions about culturalbehaviors51 or biological causes andtheir impact on health disparities.51
This review should be viewed in lightof its design. It may be that somerelevant articles were omitted due tolack of full-text availability,unavailability of publication in theEnglish language, or items notavailable through our search sources.However, articles retrieved in our
study are a representative sample ofliterature in this field that would bereadily accessible to most NICUhealth care practitioners. Additionally,research has been published in thisarea since the time of our search.58–62
Due to study heterogeneity, meta-analysis of data was not possible. Ourdefinition of measurement of qualityof care has relied on input fromexperts in our previous research.8
Although we use this frameworkexplicitly for this review, it isimportant to understand thatdisparities in care and outcomes mayoverlap with biologic andsocioeconomic factors that may bedifficult to untangle.3 We do notaddress these important issues in ourreview. However, there is ampleevidence that racial and ethnicminorities have disadvantages acrossthe spectrum of factors identified asrepresenting quality of NICU care.These disadvantages aremultifactorial but find expression notjust across populations but also inundue variation across hospitals. Weare currently developing a dashboardto track NICU performance over timeby racial and/or ethnic disparities toserve and inform accountable careorganizations in improvingpopulation health and achievinghealth equity.
Gaps remain in the research. Althougha history of institutional racism helpsexplain why racial and ethnicminorities are more likely to be caredfor in worse quality NICUs, what arethe contemporary mechanisms thatcontinue to stratify infants intodifferent care settings? Althoughinterpersonal racism can explainsome within-NICU variation,particularly in process of caremeasures (eg, racially biased bedsidepractices, clinician attitudes), how dodifferences in processes translate into
worse outcomes? We believe that thisresearch requires both quantitativeand qualitative approaches designedto generate hypotheses and testsolutions and should involve affectedcommunities as advisors orpartners.53
CONCLUSIONS
In this review of racial and ethnicdisparities in NICU quality of care, wesuggest that disparities in neonataloutcomes are partly consequences ofdifferential quality of care or access tohigh-quality care. That is, NICUs arenot isolated from racism anddisparities in infant outcomes“increasingly reflect the interactionbetween social forces and technicalinnovation.”63 Researchers are nowlooking at chronic stress caused bysocietal, institutional, orinterpersonal racism as causal factorsfor preterm birth,64,65 and in thisreview, we suggest that these factorsare also causal factors for racial andethnic disparities in NICU quality ofcare. Targeted QI efforts hold promisefor improving racial and ethnic equityin care delivery.
ABBREVIATIONS
BMF: breast milk feedingDHM: donor human milkECMO: extracorporeal membrane
oxygenationGA: gestational ageIVH: intraventricular hemorrhageNEC: necrotizing enterocolitisQI: quality improvementRDS: respiratory distress
syndromeROP: retinopathy of prematurityVLBW: very low birth weightWIC: Supplemental Nutrition
Program for Women, Infants,and Children
PEDIATRICS Volume 144, number 2, August 2019 19 by guest on December 27, 2020www.aappublications.org/newsDownloaded from
Address correspondence to Krista Sigurdson, PhD, Perinatal Epidemiology and Health Outcomes Research Unit, Division of Neonatology, Department of Pediatrics,
Stanford University School of Medicine, MSOB Room x1C19, 1265 Welch Rd, Stanford, CA 94305. E-mail: [email protected]
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
Copyright © 2019 by the American Academy of Pediatrics
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Drs Sigurdson, Morton, and Profit and Ms Mitchell are supported by a grant from the Eunice Kennedy Shriver National Institute of Child Health and
Human Development (R01 HD083368-01, principle investigator: Dr Profit). Dr Sigurdson is also supported by a postdoctoral support award from the Stanford
Maternal and Child Health Research Institute. Funded by the National Institutes of Health (NIH).
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
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DOI: 10.1542/peds.2018-3114 originally published online July 29, 2019; 2019;144;Pediatrics
Henry C. Lee, Nicole Capdarest-Arest and Jochen ProfitKrista Sigurdson, Briana Mitchell, Jessica Liu, Christine Morton, Jeffrey B. Gould,
Racial/Ethnic Disparities in Neonatal Intensive Care: A Systematic Review
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Henry C. Lee, Nicole Capdarest-Arest and Jochen ProfitKrista Sigurdson, Briana Mitchell, Jessica Liu, Christine Morton, Jeffrey B. Gould,
Racial/Ethnic Disparities in Neonatal Intensive Care: A Systematic Review
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