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 are born at term with a moderate or se-
vere encephalopathy due to perinatal as-
phyxia (hypoxic-ischemic encephalopathy,
HIE) has remained relatively stable at 1 per
1000 births
4). Accordingly, approximately 80
infants per year are born in Switzerland with
moderate to severe encephalopathy (Sarnat
g r ade 2–3 )
5) due to perinatal asphyxia during
the first hours of life.
In both populations, about 15
% of
the children
die at or soon after birth
6) , 7) , a rate compara –
ble to or lower than that of at- r isk p opulations
in other nations with similar health care stan –
dards
8). O f the sur v i v ing infant s , approx imate –
ly 10–15
% de
velop a severe disability such as
cerebral palsy, mental retardation, or severe
sensory impairment
9) , 10 ) .
The prevalence of major developmental disa –
bilities increases with more severe degree of
HIE or lower gestational age at birth. Impor-
tantly, moderate to mild neurodevelopmental
disorders can also occur in the absence of
major disabilities in all developmental do –
mains, including learning disabilities, langua –
ge delay, motor coordination disorder, and
problems of behavior and social interaction.
Some problems, such as dyscalculia or exe-
cutive function impairment, only become ap –
parent during later school age, when more
complex academic and cognitive skills deve-
lop
11) , 12) , 13 ) . Overall, these problems occur in
approximately 50
% of
children with HIE Sar-
nat grade 2–3 or in 30–50
% of
children born
below 32 weeks of gestation
15 ).
Inter estingly, at least in childr en b or n pr eter m ,
health-related quality of life is comparable to
that of their peers
16 ) , 17 ) . Regarding long-term
outcomes, the prevalence of neuro
dev
e
–
lopm
ental deficits varies greatly depending on
country and the sociodemographic back –
ground of the study populations
18 ) , 19 ) . Many
Introduction
Target population
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.
Background
In recent decades, technical advances and
improved medical treatment have resulted in
better perinatal care, leading to significantly
higher survival rates in high-risk newborns.
Simultaneously, changing demographics such
as older maternal age and higher rates of
medically assisted reproductions have led to
a higher rate of infants born preterm
1). In
Switzerland, the rate of children born with a
birth weight below 1500g has doubled over
the last three decades
2). Approximately 800
preterm infants (with a gestational age below
32 weeks) are born in Switzerland every
year
3). W hile the r ate of childr en b or n pr eter m
has steadily increased, the rate of children pr eter m sur v i vor s , however, ar e in mainstr eam
school and are coping well as they enter adult
life, although some w ill continue to need addi
–
tional health, educational, and social ser –
vices
20 ). Currently, no study has examined
long-term or adult outcome after perinatal
asphyxia. The degree to which perceived im –
pr ovement s b et we en scho ol age and adult age
are a result of early intervention strategies
21 ),
an optimal schooling system, or delayed ma –
turational processes remains unclear.
The Swiss network contributes to answering
this question. Importantly, early detection of
a developmental problem is critical for care –
takers, parents, and the growing child. We
conclude that high-risk newborn children in
Switzerland require repeat, standardized and
detailed follow-up examination at specialized
centers, both to assist in their development
and to answer important research questions.
SwissNeoNet
In 2002, all nine Swiss perinatal centers that
combine neonatal with developmental- and/or
neuropediatric units (Geneva, Lausanne, Berne,
Basel, Aarau, Lucerne, Chur, Zurich and St.
Gallen) funded the Swiss Neonatal Network &
Follow-up Group (SwissNeoNet) to coordinate
repor ting of mor talit y, morbidit y, and neurode –
velopmental outcome of high-risk newborns.
The aim was to provide continuous follow-up
assessments of high-risk newborns across
Switzerland so as to improve the quality and
efficiency of medical care through a nationwide
follow-up network. These assessments comple –
ment the r egular follow – up as ses sment s p er for –
med by primary care providers. To ensure high
follow-up rates, additional regional follow-up
centers (Bellinzona, Lugano, Münsterlingen,
Winterthur, Fribourg, Bienne, Neuchatel and
Sion) were integrated into the network.
A state-of-the-art population-based online
registry for high-risk newborns in Switzerland
supports the network’s administration and
provides a foundation for its dual purpose in
research and quality control. The most im
–
por
tant diagnoses and treatments are pros-
pectively collected during the first perinatal
hospitalization, and standardized follow-up
assessments are undertaken at two and five
to six years of age.
Today, this registry holds continuous standar –
dized population-based data for very preterm
born infants since 2000 and for term infants
with HIE since 2010
22).
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 M 1), Borradori-Tolsa C. 2), Bickle- Graz M 3), Grunt S 4), Weber P 5), Capone Mori A 6),
Bauder F 7), Hagmann C 1), Natalucci G 1), Pfister RE 8), Latal B 9), for the Swiss Neonatal
Network & Follow-up Group
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)
Chi
ld Development Center, Zurich University
Children’s Hospital, Zurich Switzerland.
Keywords: very preterm, asphyxia, follow-up, neona –
tology, neurodevelopment, quality of life, quality im –
provement, register
1Prof. ffRTof ff.abi
1Prof. RTafT
7
Purpose of the follow-up
examinations of high-risk
newborns in Switzerland
The purpose of follow-up assessments within
the SwissNeoNet is to provide early detection
of neurodevelopmental impairments in high-
risk children using standardized assessment
tools. This enables early treatment of de
–
vel
opmental impairments and facilitates
parental counseling
18) , 23 ) , 24) . By registering
neuro
develop
mental outcome within the
SwissNeoNet, epidemiological data is gathe –
red which allow for nationwide, population-
based information on outcome in both at-risk
populations.
The present paper summarizes the standards
for follow-up assessments elaborated in Swit –
zerland since 2006 by experienced follow-up
specialists and child neurologists. These
st andards were dr aw n f rom biannual str uctu –
red and minuted network meetings of the Sw is s Ne oNet . T hey do cument a consensus in
Switzerland on how to optimally perform
follow-up assessments in high-risk newborn
infants. They, however, also respect regional
differences and describe purpose, location,
content, follow-up ages, and recruiting stra-
tegies.
The Swiss level III neonatology units initiated
a quality network that covers more than 95
%
of S
wiss newborn infants born below 32
weeks GA and/or <
150
0 g on a voluntary
basis and without government funding. Since
2010, term infants with HIE are also included
in the register.
This network monitors the most important
outcome variables, relates them to neonatal
care, and compares them between units, ac -
tivities which enable the detection of potenti -
al areas of improvement
8). Further, the Swiss
population outcomes are regularly compared
with published reports from other networks such as the Vermont Oxford Network
25) and
the EuroNeoNet 26); this reveals that Switzer -
land has a high international standard in neo -
natal care.
So far, these international comparisons have
been restricted to outcome data at discharge.
The success of continuous progress in perina -
tal medicine is often monitored by means of
short-term outcomes. They may, however,
result in long-term disabilities. One notable
example of the contrast between short- and
long-term benefits arose from postnatal dexa -
methasone treatment, facilitating extubation
in very preterm infants; however, the use of
dexamethasone was later associated with an
increased risk of cerebral palsy
24 ). Thus, the
epidemiological monitoring of long-term out -
come measures is essential.
The data monitoring and center-to-center
comparisons depend on the completeness of
dat a at a p opulation level and on their compa -
rability between units, i.e. that all units use
comparable test batteries at similar time in -
tervals. In addition, the definitions of morbi -
dities and impairments (such as moderate to
sever e auditor y or v isual impair ment ) ne e d to
match published international standards to
allow comparison of Swiss data to internatio -
nal data. Finally, these definitions need to in -
corporate regional language differences and
local follow-up standards.
To improve neonatal care and outcome of fu -
ture high-risk newborns, data from follow-up
assessments are continuously and prospec -
tively collected in the registry and linked to
neonatal data, which is collected from birth
until discharge. In this way, the register provi -
des an invaluable tool for pinpointing risk
factors for developmental impairment. Fur -
thermore, the administrative support of the
registry can aid follow-up recruitment and
organization, which increases the follow-up
rate, to the benefit of each participating cen -
ter and ultimately of the children.
Several research studies from the registry
have contributed to a better understanding
of risk factors for adverse outcome. For ex-
ample, Schlapbach et al. demonstrated that
neonatal sepsis is significantly associated
with impaired neurodevelopmental outcome
at two years of age in extremely preterm
27).
Another important finding of the collaborative
effort between neonatologists and develop -
mental pediatricians is that neurodevelop
LocationAddress Telephone
Aarau
Neuropädiatrie, Klinik für Kinder und Jugendliche,
Kantonsspital Aarau (KSA) 062 838 49 17
Basel Abteilung für Neuropädiatrie,
Universitätskinderspital Basel (UKBB) 061 704 19 06
Bern Abteilung für Neuropädiatrie,
Universitätsklinik für Kinderheilkunde Inselspital 031 632 31 10
Biel/Bienne Zentrum für Entwicklungsförderung (Z.E.N),
Kloosweg 22, Biel 032 321 42 00
Chur Neuropädiatrie, Kantonsspital Graubünden (KSGR) 081 256 64 06
Fribourg Neuropédiatrie, Clinique de pédiatrie Fribourg (HFR) 026 426 74 17
Genève Ser vice du Développement et Croissance, Département
de l'Enfant et de L'Adolescent, Hôpitaux Universitaires
de Genève 022 372 54 91
Lausanne Unité de Développement,
Centre hospitalier Universitaire Vaudois (CHUV) 021 314 34 69
Luzern Abteilung für Neuropädiatrie, Kinderspital Luzern
041 205 31 70
Neuchâtel Département de Pédiatrie, Hôpital Neuchâtelois
032 713 34 64
St. Gallen KER-Zentrum, Zentrum für Kinderneurologie,
Entwicklung und Rehabilitation, St. Gallen 071 243 73 32
Thurgau Entwicklungspädiatrisches Zentrum,
Kantonsspital Münsterlingen (KSM) 071 686 21 65
Ticino Servizio di Neuropediatria,
Ospedale Regionale di Bellinzona 091 811 91 95
Valais Service de Pédiatrie, Hôpital de Sion
027 603 42 37
Winterthur Sozialpädiatrisches Zentrum, Kantonsspital Winterthur
052 266 29 17
Zürich Abteilung Entwicklungspädiatrie, Kinderspital Zürich
044 266 82 47
Table 1: Developmental pediatric and neuropediatric units in Switzerland performing
neurodevelopmental follow-up of high-risk newborns.
Weitr- rruntr rr-dFo
Weitr- undrn
8
mental outcome of extremely preterm born
children is determined by major neonatal
morbidities rather than gestational age or
birth weight
9). These findings have a direct
impact on parental counseling and the medi -
cal decision-making processes.
Several obstacles may impair communication
between the neonatal units and the follow-up
centers. Each high-risk newborn needs an
individual invitation to a follow-up center.
However, follow-up centers are not always
made aware of the existence of a patient, or
the patient is not transferred to the correct
center. This often happens when young fami -
lies move to settle at a more permanent loca-
tion before or at the time when their children
start school. To avoid the subsequent loss to
follow-up, the registry’s infrastructure provi-
des follow-up units with a constantly updated
list from which the units can see who needs
follow - up. I f a patient has moved to the catch -
ment ar ea of another unit , the r egistr y act s as
a broker between the old and the new unit so
that the new unit has the information it re- quires to invite the patient. Should a patient
be unknown to a follow-up unit because the
unit has never r e cei ve d a r efer r al, the r egis tr y
provides the details of the neonatal unit that
formerly treated the patient and can perform
the formal transfer. In each case, the registry
itself does not obtain any personal informati
-
on other than the birth date and the birth lo -
cation, from which it cannot derive any iden -
tification. These actions greatly reduce loss
of follow-up.
O ne could ar gue that b et ter discipline in com -
municating among participating units would
be sufficient and would render organizational
assistance unnecessary. However, as person -
nel such as r esident s or par t- time administr a -
tive assistants in participating units frequent -
ly change, even the best efforts at improving
discipline are likely to fail. This is why we
chose to follow the recommendation of quali-
ty improvement experts such as Ellsbury et
al. and invested in a f unctioning system r ather
than tinkering with best efforts
28 ). One consequence, however, is that these re-
cruiting lists sometimes lead to the miscon
-
ception that follow-up assessments are per -
formed «because of the registry» or even «for
the registry». This is not the case, so it is im-
portant to state that the registry’s first and
foremost goal is to facilitate follow-up asses-
sments for the benefit of the child and its
parents . The data collection to the registry
itself is of secondary importance and is de-
pendent upon parental consent, even if it will
additionally benefit the population of high-risk
newborns as discussed above. None of the
children are recruited simply or primarily for
the purpose of delivering data to the registr y.
Location of follow-up examinations
Children born at high risk for developmental
impairment are examined in a limited number
of centers ( Tab l e 1). T hese center s ar e sp e cia -
lized and experienced in developmental as -
sessments and use validated and standar -
dized tests and questionnaires. The centers
are either child development or pediatric
neurology centers. Pediatricians in private
practice can examine high-risk children for
the registry instead of a center if they can
demonstrate comparable experience and
training specific to high-risk newborn infants
and if they frequently use the test batteries
agreed upon by the network. All participating
centers and pediatricians need to be mem-
b er s of the Sw is s Neonat al Net wor k & Follow -
up Group and par ticipate at the regular, bian -
nual conferences. They enter the standardized
data they have acquired into the registry as
specified below.
Contents and milestone ages of
follow-up examinations
The individual follow-up examinations are
p er for me d at inter vals de fine d by each center
but covering the jointly agreed cornerstone
ages. C or r ection for pr ematur it y is made until
the completion of the two -year examination.
Up to two years, the age at which follow-up
examinations are performed depend on the
local tradition of follow-up intervals, availab -
le p er sonnel and the r egional r eimbur sement
practices of the disability insurance compa -
ny (IV). At 2 and 5–6 years , follow-up exa-
minations using the jointly agreed identical
assessment batteries are uniformly perfor -
med throughout Switzerland to ensure com -
parability ( F i g . 1). According to Vohr et al.
Neonatal Data is sent to SwissNeoNet:
SwissNeoNet provides follow- up lists and tables
for recruitment and/or transfer to other center
3 months – 15 months
individual assessment intervals
According to center strategy
3 – 4 Ye a r s
Individual assessment intervals
According to center strategy Bayley III
neurological, visual and hearing examination
K-ABC II
neurological, motor,
visual and hearing examination, assessment of behaviorCorr. 18–24 Months
5.5 – 6 Ye a r s
High-risk newborn child
Data is sent to SwissNeoNet:
all years: bom < 28w GA, ASP with Samat II/III
2000, 2006, 2013: bom < 32w GA
Data is sent to SwissNeoNet:
all years: bom < 28w GA, ASP with Samat II/III
2000, 2006, 2013: bom < 30w GA
NICU organizes follow-up transfer
FU2
FU5
Fig. 1:
The ages at which information on outcome is collected for the SwissNeoNet.
1Prof. ffRTof ff.abi
1Prof. RTafT
9
(2003), a valid developmental examination
combined with a neurological examination
conducted at 18–22 months corrected age
w ill identif y the vast major it y of childr en w ith
cerebral palsy (CP), certainly all those with
moderate or severe CP.
24 ) In addition, cogni-
tive and language delay should be assessed
at that age, if not already diagnosed by the
primary care provider, and a special evalua -
tion by a speech and language therapist can
be initiated so as to guarantee appropriate
treatment. In the case of a cognitive delay,
ear ly inter vention ther apy should b e st ar te d.
If behavioral or social interaction problems
are noted during this exam, or if it is unclear
whether a developmental delay is present,
specialists will re-examine these children for
further testing or refer children to a child
psychologist.
At 5–6 years of age, the evaluation provides
valuable infor mation on a w ide r ange of deve -
lopment al domains that w ill help to deter mine
the issue of school readiness, among other
questions. Currently, this assessment miles -
tone suffers from the difficulty of long-term
tr acking and high los s to follow - up as sociated
in part with long periods of lack of contact
with the parents. Some centers may therefore
assess the children at 3–4 years using their
individual assessment protocol.
The test batteries chosen by the center re -
presentatives of the SwissNeoNet for the two
milestone ages of 2 and 5–6 years are stan-
dardized, internationally used assessment
tools with normative values
29 ) , 3 0 ) , 31 ) . Their use
w ill allow us to compar e outcome r esult s w ith
those of other centers.
At 18-24 months corrected age
(maximum age range 15–29 months)
•
Bayl
ey Scales of Infant Development III
(Cognition, Language, Motor)
32) for all child -
ren born with a gestational age below 28
weeks or for all children that developed a
moderate to severe encephalopathy due to
asphyxia ( Fig. 1). For all other children, the
Griffith’s Test
33) may be administered if the
Bayley Scales of Infant Development III are
not available or in case of time constraints.
•
Neuro
logical examination including classi -
fication of cerebral palsy according to
Surveillance of Cerebral Palsy in Europe
(SCPE)
34) and Palisano’s gross motor func -
tion classification 35)
• Visual examination
(in
cl. Lang test) 36): classification into •
norm
al development
(no p
roblems or minor problems not
int
erfering with function)
•
mode
rate problems
(e.g
. corrective glas
ses
, strabism)
•
sev
ere problems
(se
vere visual impairment or blindness)
•
Hea
ring examination to allow classification
into
•
norm
al development
(none
or minor problem)
•
mode
rate (moderate hearing impairment
not requiring hearing aids)
•
sev
er e ( hear ing aids or cochlear implant )
At 5–6 years uncorrected age
(maximum age range 4.5–6.5 years)
•
Int
ellectual examination: Kaufmann Asses
-
sment Battery for Children (K-ABC)
37)*
•
Neu
rological examination: this includes CP
classification according to SCPE and the
gross motor function classification sys -
tem
35)
•
Mot
or examination: Zurcher Neuromotor
Assessment
38)
•
Ass
essment of behavior: Strength and
Difficulties Questionnaire (SDQ)
39)
•
Vis
ual examination: classification into
•
norm
al development
(no
problems or minor problems not in -
terfering with function)
•
mode
rate problems
(re
duced vision despite correction)
•
sev
ere problems
(se
vere visual impairment or blindness)
•
Hea
ring examination: classification into
•
norm
al development
(none
or minor problem)
•
mode
rate (moderate hearing impairment
requiring hearing aids)
•
sev
ere (hearing impairment despite hea-
ring aids)
To obtain outcome data comparable with pu-
blished data, the participating centers must
reach a follow-up rate of at least 80
% bo
th for
the two -year and for the 5–6 year examination
accor ding to the St andar ds for Levels of Neo -
natal Care of the Swiss Society of Neonatolo-
gy
40) and to international recommendations 24 ).
Avoiding loss of follow-up
The online registr y of the SwissNeoNet provi -
des lists and tables of eligible children ensu -
ring that no high-risk child is forgotten. Sup -
port tools for follow-up include alerts to send
invitations to parents for follow-up consulta -
tions, administrative transfer of children from
one perinatal center to another, calculation of
corrected age and the provision of contact
information on partnering institutions. Access
to the registry is restricted to the attending
physicians and therapists of the participating
centers. Children can be identified via their
encr y pte d p er sonalize d dat a only by the at ten -
ding physician or therapist. Parents of children
not yet covered by the follow-up program are
invited to contact the follow-up center closest
to home for enrollment, as listed in Tab. 1 .
In addition to the data collection and manage -
ment tools, the network fosters transparent
multi-center research and quality control
projects to maximize the benefit of maintai-
ning an elaborate database by initiating stu-
dies, offering coordination and/or statistical
support, fostering collaboration between par -
ticipants, etc.
To ensure the highest follow-up rate, we re-
commend these steps:
•
Fam
ilies must b e made awar e of the imp or -
tance of follow-up examinations during the
first hospitalization after birth, i.e. by the
neonatologists. Neonatologists must either
arrange the first follow-up examination di -
rectly or send a copy of the discharge re-
port to the follow-up center nearest to the
family’s home (Tab. 1) .
•
Est
ablishment of first contact between the
follow - up center and the families should b e
via a secretary or a physician.
•
Thi
s contact should be complemented by a
written invitation.
•
Twins
/triplets should be invited simultane -
ously if resources allow.
•
If
parents refuse assessment or parents do
not show up, then the pediatrician respon -
sible should be informed so that he or she
can cont act the par ent s dir ectly and infor m
them of the purpose of the examinations.
•
If p
arents continue to refuse to attend exa-
minations, they should be asked if they
would be willing to fill in a parental questi -
onnair e that would b ene fit the r esear ch and
quality control but would be of no direct
benefit to the child or its family.
* The currently used developmental test at 5–6 years
of age, i.e. the K-ABC, is outdated. While its revised
version (K-ABC II) is applied in English - and French -
speaking nations, a German version is not yet
available. The SwissNeoNet representatives have
therefore decided to wait until 2015 before selec -
ting a replacement assessment batter y for K-ABC,
which must be available for all three major Swiss
languages.
1Prof. ffRTof ff.abi
1Prof. RTafT
10
Additional information
Additional information can be found on the
website of the Swiss Society of Neonatology
under «Network»: www.neonet.ch.
Acknowledgements
We would like to thank the following units for collabo -
rating in the SwissNeoNet: Aarau: Cantonal Hospital
Aarau, Children’s Clinic, Department of Neonatology
(Ph. Meyer, C. Anderegg), Department of Neuropaedi -
atrics (A. Capone Mori, E. Nava); Basel: University
Children’s Hospital Basel, Department of Neonatology
(S. Schulzke), Department of Neuropaediatrics and
Developmental Medicine (P. Weber); Bellinzona: San
Giovanni Hospital, Department of Pediatrics (G.P. Ra -
melli); Berne: University Hospital Berne, Department
of Neonatology (M. Nelle), Department of Pediatrics (B.
Wagner), Department of Neuropaediatrics (M. Steinlin,
S. Grunt); Biel: Development and Pediatric Neuroreha -
bilitation Center (R. Hassink); Chur: Children’s Hospital
Chur, Department of Neonatology (W. Bär), Depart -
ment of Neuropaediatrics (E. Keller, Ch. Killer); Fri -
bourg: Cantonal Hospital Fribourg, Department of
Neuropediatrics (K. Fuhrer); Lausanne: University
Hospital (CHUV), Department of Neonatology (J.-F.
Tolsa, M. Roth-Kleiner), Department of Child Develop -
ment (M. Bickle - Graz); Geneva: Department of child
and adolescent, University Hospital (HUG), Neonato -
logy Units (R. E. Pfister), Division of Development and
Growth (P. S. Huppi, C. Borradori-Tolsa); Lucerne:
Children’s Hospital of Lucerne, Neonatal and Paediat -
ric Intensive Care Unit (T. M. Berger), Department of
Neuropaediatrics (T. Schmitt-Mechelke); Lugano: Re -
gional Hospital Lugano, Department of Pediatrics (V.
Pezzoli); Muensterlingen: Cantonal Hospital Muenster -
lingen, Department of Pediatrics (A. Mueller); Neucha -
tel: Cantonal Hospital Neuchatel, Department of Pedi -
atrics (M. Ecof fey); Sion: Ser vice de pédiatrie du CHVR,
hôpital de Sion (R. Tabin, J. Llor, JP, Marcoz, J.J. Chese -
aux); St. Gallen: Cantonal Hospital St. Gallen, Depart -
ment of Neonatology (A. Malzacher), Children’s Hospi -
tal St. Gallen, Neonatal and Paediatric Intensive Care
Unit (J. P. Micallef ), Department of Child Development
(C. Birker); Winterthur: Cantonal Hospital Winterthur,
Department of Neonatology (L. Hegi), Social Pediatrics
Center (M. von Rhein); Zurich: University Hospital Zu -
rich (USZ), Department of Neonatology (D. Bassler, R.
Arlettaz), University Children’s Hospital Zurich, Depart -
ment of Neonatology (V. Bernet) and Child Develop -
ment Centre (B. Latal, G. Natalucci).
Reference1) Bucher HU. (2013). The future of neonatology:
po ssibilities and limitations. Praxis (Bern 1994).
102 (15): 919–24.
2)
Ada
ms M, Bucher HU; Swiss Neonatal Network &
Follow-up Group. (2013). Neonatologie: Ein früher
Start ins Leben: Was bringt ein nationales Register?
Néonatologie: Un début précoce dans la vie:
qu´apporte un registre national? Schweiz Med Fo -
rum 2013; 13 (03): 35–37.
3)
Ber
rut S. Gesundheit der Neugeborenen 2008.
Frühgeburten, Mehrlingsschwangerschaften und
Wachstumsretardierung. Bern: Bundesamt für Sta -
tistik BFS Aktuell 2010.
4)
Low J
A, Lindsay BG, Derrick EJ. Threshold of meta -
bolic acidosis associated with newborn complica -
tions. Am J Obstet Gynecol 1997; 177: 1391e4.
5)
Sar
nat HB, Sarnat MS. Neonatal encephalopathy
following fetal distress. Arch Neurol. 1976 33:
698 –705.
6)
Rüe
gger Ch, Hegglin M, Adams M, Bucher HU and
the Swiss Neonatal Network. (2012). Population
based trends in mortality, morbidity and treatment
for ver y preterm - and ver y low birth weight infants
over 12 years. BMC Pediatrics 2012, 12: 17.
7)
Hag
mann CF, Brotschi B, Bernet V, Latal B, Berger
TM, Robertson NJ. Hypothermia for perinatal as -
phyxial encephalopathy. Swiss Med Wkly. 2011 Feb
16; 141: w13145.
8)
Ada
ms, M, Bucher, HU, Hoehre TC; the Swiss Neo -
natal Network. The Swiss Neonatal Quality Cycle, a
monitor for clinical performance and tool for quali -
ty improvement. BMC Pediatrics 2013, 13: 152.
9)
Schlapb
ach LJ, Adams M, Proietti E, Aebischer M,
Grunt S, Borradori-Tolsa C, Bickle - Graz M, Bucher
HU, Latal B, Natalucci G.; the Swiss Neonatal Net -
work and Follow-up Group.
Out
come at two years of age in a Swiss national
cohort of extremely preterm infants born between
2000 and 2008. BMC Pediatr. 2012 Dec 28; 12 (1):
198.
10)
Per
ez A, Ritter S, Brotschi B, Werner H, Caflisch J,
Martin E, Latal B. Long-term neurodevelopmental
outcome with hypoxic-ischemic encephalopathy. J
Pediatr. 2013 Aug; 163 (2): 454–9. doi: 10.1016.
11)
Aar
noudse - Moens CS, Weisglas - Kuperus N, van
Goudoever JB, Oosterlaan J. Meta-analysis of neu -
robehavioral outcomes in very preterm and/or very
low birth weight children. Pediatrics. 2009 Aug;
124 (2): 717–28.
12)
Sai
gal S, Stoskopf B, Streiner D, Boyle M, Pinelli J,
Paneth N, Godderies J. Transition of Extremely
Low-Birth-Weight Infants From Adolescence to
Young Adulthood. JAMA. 2006; 295: 667–675.
13)
Mul
der H, Pitchford NJ, Hagger MS, Marlow N.
Development of executive function and attention
in preterm children: a systematic review. Dev Neu -
ropsychol. 2009; 34 (4): 393–421.
14)
Per
ez A1, Ritter S, Brotschi B, Werner H, Caflisch J,
Martin E, Latal B. Long-term neurodevelopmental
outcome with hypoxic-ischemic encephalopathy. J
Pediatr. 2013 Aug; 163 (2): 454–9.
15)
Lat
al B. Prediction of neurodevelopmental outcome
after preterm birth. Pediatr Neurol. 2009 Jun; 40
( 6 ) : 413 – 9.
16)
Zwi
cker JG, Harris SR. Quality of life of formerly
preterm and ver y low birth weight infants from
preschool age to adulthood: a systematic review.
Pediatrics. 2008 Feb; 121 (2): e366–76.
17)
Sai
gal S1, Stoskopf B, Pinelli J, Streiner D, Hoult L,
Paneth N, Goddeeris J. Self-perceived health-rela -
ted quality of life of former extremely low birth
weight infants at young adulthood. Pediatrics. 2006
Sep; 118 (3): 1140–8.
18)
And
erson PJ. Neuropsychological outcomes of
children born very preterm. Semin Fetal Neonatal
Med. 2014 Apr; 19 (2): 90–6.
19)
Hac
k M. Survival and neurodevelopmental outco -
mes of preterm infants. J Pediatr Gastroenterol
Nutr. 2007 Dec; 45 Suppl 3: S141–2.
20)
Joh
nson A1, Bowler U, Yudkin P, Hockley C, Wariyar
U, Gardner F, Mutch L. Health and school per for -
mance of teenagers born before 29 weeks gestati -
on. Arch Dis Child Fetal Neonatal Ed. 2003 May; 88
(3): F19 0 – 8 .
21)
Nor
dhov SM1, Rønning JA, Dahl LB, Ulvund SE,
Tunby J, Kaaresen PI. Early inter vention improves
cognitive outcomes for preterm infants: rando -
mized controlled trial. Pediatrics. 2010 Nov; 126
(5): e1088 –94.
22)
Forum
medizinische Register Schweiz FMH: h t t p : //
www.fmh.ch/saqm/_service/forum_medizi
nische_register_doc.cfm?fuseaction_sea=
detail&id=27 .
23)
Doy
le LW, Anderson PJ. Long term outcome for the
tiniest or most immature babies. Semin Fetal Neo -
natal Med. 2014 Apr; 19 (2): 71.
24)
Voh
r BR, O’Shea M, Wright LL. Longitudinal multi -
center follow- up of high -risk infants: why, who, when, and what to assess. Semin Perinatol. 2003
Aug; 27 (4): 333–42.
25)
Hor
bar JD, Soll RF, Edwards WH: The vermont ox -
ford network: a community of practice. Clin Perina -
tol 2010, 37: 29–47.
26)
Val
ls -i-Soler A, Azpaitia A, EuroNeoNet: EuroNeo -
Net Annual Report for VLGAI & Individual Report for
Each Unit Participating in the EuroNeoNet Project.
Year 2010. Barakaldo: EuroNeoNet; 2012: 30.
27)
Schlapb
ach LJ, Aebischer M, Adams M, Natalucci
G, Bonhoef fer J, Latzin P, Nelle M, Bucher HU, Latal
B; the Swiss Neonatal Network and Follow- Up
Group. Impact of Sepsis on Neurodevelopmental
Outcome in a Swiss National Cohort of Extremely
Premature Infants. Pediatrics. 2011; 128 (2): e348–
e358
28)
Ell
sbur y DL, Ursprung R: A Primer on quality impro -
vement methodology in neonatology. Clin Perinatol
2010, 37: 87–99.
29)
Bhu
tta AT, Cleves MA, Casey PH, Cradock MM,
Anand KJ. Cognitive and behavioral outcomes of
school-aged children who were born preterm: a
meta-analysis. JAMA. 2002 Aug 14; 288 (6): 728–37.
30)
Johnson
S. Cognitive and behavioural outcomes
following ver y preterm birth. Semin Fetal Neonatal
Med. 2007 Oct; 12 (5): 363–73.
31)
Schmidhaus
er J1, Caflisch J, Rousson V, Bucher HU,
Largo RH, Latal B. Impaired motor per formance
and movement quality in very-low-birthweight
children at 6 years of age. Dev Med Child Neurol.
2006 Sep; 48 (9): 718–22.
32)
Bay
ley, N. (2006). Bayley Scales of Infant and Todd -
ler Development (3
rd ed.). San Antonio: Psychologi -
cal Corporation.
33)
Gri
f fiths R. The abilities of young children. High
Wycombe, UK: The Test Agency, 1976.
34)
htt
p://www.scpenetwork.eu/
35)
Pal
isano R, Rosenbaum P, Walter S, Russell D, Wood
E, Galuppi B. Development and reliability of a sys -
tem to classif y gross motor function in children
with cerebral palsy. Dev Med Child Neurol. 1997
Apr; 39 (4): 214–23.
36)
Lan
g J. Mikrostrabismus. (1982). Die Bedeutung der
Mikrotropie für Amblyopie, für die Pathogenese des
großen Schielwinkels und für die Heredität des
Strabismus (= Bücherei des Augenarztes. Heft 62).
2., überarbeitete und erweiterte Auflage. Stuttgart:
Enke.
37)
Mel
chers P, Preuß U. (2009). Kaufman Assessment
Battery for Children. 8., unveränderte Auflage.
Frankfurt/Main: Pearson Assessmen.
38)
Lar
go RH, Fischer JE, Caflisch JA, Jenni OG. (2007)
Zürcher Neuromotorik (ZNM) (2., erg. Aufl.). Zürich:
AWE-Verlag.
39)
Goo
dman R. The Strengths and Difficulties Questi -
onnaire: A Research Note. Journal of Child Psycho -
logy and Psychiatr y, 38, 581–586. http://www.
sdqinfo.org/ .
40)
Sta
ndards for Levels of Neonatal Care in Switzer -
land. http://www.neonet.ch/assets/pdf/2011- 01-
28_-_levels_of_neonatal_care.pdf .
Corresponding
Mark Adams
Department of Neonatology
University Hospital Zurich
Wagistrasse 14
8952 Schlieren
mark.adams @ usz.ch
+4144 556 3034
1Prof. ffRTof ff.abi
1Prof. RTafT
Weitere Informationen
Autoren/Autorinnen
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
