High-risk newborns in the context of these guidelines are children who were born very preterm (before 32 weeks gestational age) or children who developed a hypoxic ischaemic encephalopathy (Sarnat grade 2–3) during the first hours of life.
6
who rare rborn ratrter m rwit h rarmod erate rorrse-
v ere
rence
phalopathy
rdue rtorper
inatal
ras-
ph
yxia
r(hy
poxic-ischemic
renc
ephalopathy,
r
HIE
)
rhas rrem
ained
rrel
atively
rsta
ble
ratr1rper r
1000 rbir
ths
4).rAccordingly, rapp roximately r80r
inf
ants
rper ryea
r
rare rbor
n
rinrSwi
tzerland
rwit
h
r
mode
rate
rtorsev
ere
rence
phalopathy
r(Sa
rnat
r
g r a
de
r2–3 ) 5)rdue rtorperinatal ras phyxia rdu ring r
the rfir
st
rho
urs
rofrli
fe.
r
Inrboth rpop
ulations,
rabout r15r%rofrthe rchi
ldren
r
die ratrorrsoo
n
raft
er
rbir
th
6) ,r7),rarrate rcompa-
ra
ble
rtororrlow
er
rtha
n
rtha
t
rofrat-
risk
rpop
ula-
tions
rinrothe
r
rnation
s
rwith rsimi
lar
rhealth rcar
e
r
stan
dards
8).rO frthe rsur v i v ing rin f ant s , rap prox i-
mately
r10–
15
r%rdev
elop
rarsev
ere
rdis
ability
r
suc
h
rasrcer
ebral
rpal
sy,
rmen
tal
rret
ardation,
rorr
sev
ere
rsens
ory
rimpai
rment
9) ,r10 ).rr
The rpre
valence
rofrmaj
or
rdevelopm
ental
rdis
a-
bilities
rinc
reases
rwit
h
rmor
e
rsev
ere
rdeg
ree
rofr
HIE rorrlow
er
rges
tational
rage ratrbir
th.
rImp
or-
tantly,
rmode
rate
rtormil
d
rneu
rodevelopmental
r
dis
orders
rcan rals
o
rocc
ur
rinrthe rabs
ence
rofr
maj
or
rdisabi
lities
rinrallrdev
elopmental
rdo –
ma
ins,
rincl
uding
rlear
ning
rdisabi
lities,
rlan –
gu
age
rdel
ay,
rmoto
r
rcoo
rdination
rdis
order,
rand r
pro
blems
rofrbeha
vior
rand rsoc
ial
rinte
raction.
r
Som
e
rpro
blems,
rsuc
h
rasrdys
calculia
rorrexe-
cu
tive
rfun
ction
rimpa
irment,
ronly rbec
ome
rap-
pa
rent
rdur
ing
rlat
er
rsch
ool
rage
,
rwhe
n
rmor
e
r
com
plex
raca
demic
rand rcog
nitive
rski
lls
rdev
e-
lop
11) ,r12) ,r13 ).rOverall, rthese rpro blems rocc ur rinr
app
roximately
r50r%rofrchi
ldren
rwit
h
rHIE rSar
–
nat
rgra
de
r2–3 rorrinr30–
50
r%rofrchi
ldren
rbor
n
r
bel
ow
r32rwe
eks
rofrge
station
15 ).r
Int
er estingly,
ratrle
ast
rinrch
ildr en
rb o
r n
rpr
eter m ,
r
hea
lth-related
rqua
lity
rofrlif
e
risrcom
parable
rtor
tha
t
rofrthe
ir
rpee
rs
16 ) ,r17 ).rRegarding rlong- term r
out
comes,
rthe rprev
alence
rofrneur
o
rdev
e
–
lopm
ental
rdefic
its
rvar
ies
rgre
atly
rdepen
ding
ronr
count
ry
rand rthe rsoc
iodemographic
rback –
g
round
rofrthe rstu
dy
rpop
ulations
18 ) ,r19 ).rMany r
Introduction
Target population
High-risk
rnew
borns
rinrthe rcon
text
rofrthe
se
r
guidel
ines
rare rchil
dren
rwho rwer
e
rbor
n
rver
y
r
pre
term
r(be
fore
r32rwee
ks
rges
tational
rage
)
rorr
chil
dren
rwho rdevelop
ed
rarhyp
oxic
risch
aemic
r
enc
ephalopathy
r(Sa
rnat
rgra
de
r2–3
)
rdurin
g
rthe r
firs
t
rho
urs
rofrli
fe.
Background
In
rrec
ent
rdec
ades,
rtec
hnical
radv
ances
rand r
impr
oved
rmedic
al
rtrea
tment
rhave rresu
lted
rinr
bet
ter
rper
inatal
rcar
e,
rlea
ding
rtorsig
nificantly
r
hig
her
rsu
rvival
rra
tes
rinrhi
gh-risk
rne
wborns.
r
Simul
taneously,
rchang
ing
rdem
ographics
rsuc
h
r
asrold
er
rmat
ernal
rage rand rhig
her
rrat
es
rofr
medic
ally
rass
isted
rrep
roductions
rhave rled rtor
arhig
her
rrat
e
rofrinf
ants
rbor
n
rpre
term
1).rInr
Swi
tzerland,
rthe rrat
e
rofrchi
ldren
rbor
n
rwit
h
rar
bir
th
rwei
ght
rbel
ow
r150
0g
rhas rdou
bled
rove
r
r
the rlast rthree rdec
ades
2).rApproximately r800 r
pre
term
rinf
ants
r(wi
th
rarges
tational
rage rbel
ow
r
32rwee
ks)
rare rbor
n
rinrSwi
tzerland
reve
ry
r
year 3).rW hile rthe rr ate rofrch ildr en rb o r n rpr eter m r
has rste
adily
rinc
reased,
rthe rrat
e
rofrchi
ldren
r
pr e
ter m
rsu
r v i vor s ,
rho
wever,
rar
e
rinrma
instr eam
r
sch
ool
ran
d
rar
e
rco
ping
rwe
ll
rasrth
ey
ren
ter
rad
ult
r
lif
e,
ral
though
rso
me
rw i
ll
rco
ntinue
rtorne
ed
rad
di
–
tional
rhealth
,
redu
cational,
rand rsoc
ial
rser
–
v
ices
20 ).rCurrently, rnorstu
dy rhas rexam ined r
long-
term
rorradul
t
routc
ome
rafte
r
rper
inatal
r
asp
hyxia.
rThe rdeg
ree
rtorwhi
ch
rper
ceived
rim-
pr
ovement s
rb e
t we en
rsc
ho ol
rag
e
ran
d
rad
ult
rag
e
r
are rarres
ult
rofrea
rly
rin
tervention
rst
rategies
21 ),r
anropti
mal
rscho
oling
rsyst
em,
rorrdela
yed
rmatu –
r
ational
rpro
cesses
rrem
ains
runc
lear.
r
The rSwi
ss
rnet
work
rcon
tributes
rtorans
wering
r
this rques
tion.
rImp
ortantly,
rearl
y
rdet
ection
rofr
ardevelopm
ental
rprob
lem
risrcri
tical
rfor rcar
e –
takers,
rpar
ents,
rand rthe rgro
wing
rchi
ld.
rWe r
con
clude
rtha
t
rhig
h-risk
rnew
born
rchi
ldren
rinr
Swi
tzerland
rreq
uire
rrep
eat,
rsta
ndardized
rand r
det
ailed
rfol
low-up
rexam
ination
ratrspe
cialized
r
cent
ers,
rbot
h
rtorass
ist
rinrthe
ir
rdevelop
ment
r
and rtorans
wer
rimpo
rtant
rresea
rch
rques
tions.
SwissNeoNet
In
r200
2,
rallrnin
e
rSwi
ss
rper
inatal
rcen
ters
rtha
t
r
comb
ine
rneon
atal
rwit
h
rdevelopm
ental-
rand
/or
r
neu
ropediatric
runits r(Ge
neva,
rLau
sanne,
rBer
ne,
r
Bas
el,
rAar
au,
rLuc
erne,
rChu
r,
rZur
ich
rand rSt.r
Gal
len)
rfun
ded
rthe rSwi
ss
rNeo
natal
rNet
work
r&r
Fol
low-up
rGrou
p
r(Sw
issNeoNet)
rtorcoor
dinate
r
rep
or ting
rofrmo
r talit y,
rmo
rbidit y,
ran
d
rne
urode –
velopmental
routc
ome
rofrhig
h-risk
rnew
borns.
r
The raim rwas rtorpro
vide
rcont
inuous
rfol
low-up
r
ass
essments
rofrhig
h-risk
rnew
borns
racr
oss
r
Swi
tzerland
rsorasrtorimp
rove
rthe rqua
lity
rand r
effi
ciency
rofrmed
ical
rcar
e
rthro
ugh
rarnatio
nwide
r
foll
ow-up
rnetw
ork.
rThes
e
rass
essments
rcom
ple –
ment
rth
e
rr e
gular
rfo
llow – up
ras
ses sment s
rp e
r for –
med
rbyrpr
imary
rca
re
rpr
oviders.
rToren
sure
rhi
gh
r
foll
ow-up
rrat
es,
raddi
tional
rreg
ional
rfoll
ow-up
r
cent
ers
r(Bel
linzona,
rLug
ano,
rMünst
erlingen,
r
Wint
erthur,
rFrib
ourg,
rBien
ne,
rNeu
chatel
rand r
Sio
n)
rwe
re
rin
tegrated
rin
to
rth
e
rne
twork.
A
rsta
te-of-the-art
rpop
ulation-based
ronl
ine
r
reg
istry
rfor rhig
h-risk
rnew
borns
rinrSwit
zerland
r
sup
ports
rthe rnet
work’s
radmin
istration
rand r
pro
vides
rarfou
ndation
rfor ritsrdua
l
rpur
pose
rinr
res
earch
rand rqua
lity
rcon
trol.
rThe rmos
t
rim-
por
tant
rdia
gnoses
rand rtre
atments
rare rpro
s-
pectively
rcol
lected
rdur
ing
rthe rfirs
t
rper
inatal
r
hos
pitalization,
rand rsta
ndardized
rfoll
ow-up
r
ass
essments
rare rund
ertaken
ratrtwo rand rfive r
torsi
x
rye
ars
rofrag
e.
Today,
rthis rreg
istry
rhol
ds
rcon
tinuous
rsta
ndar –
dized
rpop
ulation-based
rdat
a
rfor rvery rpre
term
r
bor
n
rinf
ants
rsin
ce
r200
0
rand rfor rter
m
rinf
ants
r
wit
h
rHI
E
rsi
nce
r20
10
22).r
Recommendations of the Swiss Society of Neonatology,
the Swiss Society of Developmental Pediatrics and the Swiss
Society of Neuropediatrics
Follow-up assessment of high-risk
newborns in Switzerland
Adams rM1),rBorradori-Tolsa rC.2),rBickle- Graz rM3),rGrunt rS4),rWeber rP5),rCapone rMori rA6),r
Bau
der
rF7),rHagmann rC1),rNatalucci rG1),rPfister rRE8),rLatal rB9),rfor rthe rSwiss rNeonatal r
Net
work
r&rFo
llow-up
rGr
oup
1) Department of Neonatology, Zurich University
Ho
spital Zurich
2)
Div
ision of Development and Growth University
Hospital Geneva
3)
Dep
artment of Child Development University Hos –
pital Lausanne
4)
Depa
rtment of Neuropediatrics University Hospital
Berne
5)
Depa
rtment of Neuropediatrics and Developmental
Medicine University Hospital Basel
6)
Depa
rtment of Neuropediatrics Cantonal Hospital
Aarau
7)
Dep
artment of Neuropediatrics Children’s Hospital
Lucerne,
8)
Neo
natology Unit, University Hospital Geneva
9)
Chil
d Development Center, Zurich University Child –
ren’s Hospital, Zurich Switzerland.
Keywords: very preterm, asphyxia, follow-up, neona –
tology, neurodevelopment, quality of life, quality im –
provement, register
FormatiaanomaiaatsTe
FormaatintsTmie
7
Purpose of the follow-up
examinations of high-risk
newborns in Switzerland
The rpurpose rofrfol low-up rass essments rwit hin r
the rSwi
ssNeoNet
risrtorpro
vide
rear
ly
rdet
ection
r
ofrneu
rodevelopmental
rimpai
rments
rinrhig
h-
risk
rchil
dren
rusing rsta
ndardized
rass
essment
r
too
ls.
rThis renabl
es
rearl
y
rtrea
tment
rofrde-
vel
opmental
rimp
airments
rand rfac
ilitates
rr
paren
tal
rcouns
eling
18) ,r23 ) ,r24).rByrregistering r
neu
ro
rdevelop
mental
routc
ome
rwit
hin
rthe r
Swis
sNeoNet,
repi
demiological
rda
ta
risrgat
he-
red
rwhich rallo
w
rfor rnation
wide,
rpop
ulation-
based
rinf
ormation
ronrout
come
rinrbot
h
rat-
risk
r
pop
ulations.
r
The rpre
sent
rpap
er
rsum
marizes
rthe rsta
ndards
r
for rfol
low-up
rass
essments
relab
orated
rinrSwi
t-
zerland
rsin
ce
r200
6
rbyrexpe
rienced
rfol
low-up
r
spe
cialists
rand rchild rneu
rologists.
rThe
se
r
st a
ndards
rwe
re
rdr
aw n
rf r
om
rbi
annual
rst
r uctu-
red
rand rmin
uted
rnet
work
rmee
tings
rofrthe r
Sw i
s s Ne oNet .
rT h
ey
rdo
cument
rarco
nsensus
rinr
Swi
tzerland
ronrho
w
rtorop
timally
rpe
rform
rfo
l
–
low-up
ras
sessments
rinrhi
gh-risk
rne
wborn
rin
–
f
ants.
rThe
y,
rhow
ever,
ralso rresp
ect
rreg
ional
r
diff
erences
rand rdesc
ribe
rpur
pose,
rloc
ation,
r
con
tent,
rfol
low-up
rage
s,
rand rrec
ruiting
rstr
a-
tegies.
The
rSwi
ss
rlev
el
rIIIrneo
natology
runi
ts
rini
tiated
r
arqua
lity
rnet
work
rtha
t
rcov
ers
rmor
e
rtha
n
r95r%r
ofrSwi
ss rnew born rinf ants rbor n rbel ow r32r
wee
ks
rGA rand
/or
r
Informations complémentaires
Auteurs
Mark Adams , Department of Neonatology University Hospital Zurich C. Borradori-Tolsa Myriam Bickle Graz PD Dr. Sebastian Grunt , Entwicklung und Rehabilitation, Universitätsklinik für Kinderheilkunde, Inselspital, Bern Prof. Dr. med. Peter Weber , Basel A. Capone Mori F. Bauder C. Hagmann G. Natalucci Riccardo Pfister , Service de Néonatologie et Soins Intensifs pédiatriques, Hôpitaux Universitaires de Genève et Université de Genève Prof. Dr. med. Bea Latal , Abteilung Entwicklungspädiatrie, Universitäts-Kinderspital Zürich, Steinwiesstrasse 75, 8032 Zürich Andreas Nydegger
