1. A systems perspective of
developmentally supportive
family centered care
Cuidados Centrados en
el Desarrollo y en la familia
11 y 12 de noviembre, 2010
Björn Westrup, MD Ph D
Karolinska University Hospital
Stockholm, Sweden

2. The ultimate objective of neonatology
Can developmental care help us to get there?

3. KapellouKapellou
20062006

4. Impact of rearing conditions during the
neonatal period on adult brain function

5. ”Environmental/epigenetic programming”
Maternal programming of steroid receptor expression and
phenotype through DNA methylation in the rat
Moshe Szyf, Michael J. Meaney. McGill University, Montreal, Canada Front Neuroendocrinol 2005
•Decreased methylation of glucocorticoid receptor promoter
• => increased gene expression
•Decreased ACTH & cortisol responses to stress in adulthood
•Increased glucocorticoid receptor & BDNF mRNA in hippocampus and CRF mRNA
in hypothalamus
•Decreased epinephrine release in hypothalamus
•Increased cholinergic innervation and synapotgenesis in hippocampus
•Decreased stress behaviors (startle responses), increased explorative behavior
•Increased spatial learning and memory
Consequences of natually occurring variations in pup licking/grooming
(High LG vs. Low LG)

6. A proposed link between variations in parent–offspring
interactions and the development of individual differences in
stress responses
If critical conditions are present in early life of forms of parent–offspring
interactions they promote increased stress responses and chronic
stress in adulthood. Szyf M, Weaver IC et al Front Neuroendocrinol 2005

7. Prematurity associeted
with medical conditions in adulthood:
Hypertension
Edstedt Bonamy et al, Pediatric Research 2005
Johansson et al, Circulation 2005
Sympatoadrenal hyperactivity
Johansson et al, J Internal Medicine 2007
Smaller vascular bed (capillary density)
Edstedt Bonamy et al, J Internal Medicine 2007
Smaller aorta
Edstedt Bonamy et al, Pediatric Research 2005
Edstedt Bonamy et al, Acta Paediatrica 2008 (1)
Edstedt Bonamy et al, Acta Paediatrica 2008 (2)
Smaller kidneys (normal GFR)
Rakow et al, Pediatric Nephrology 2008
0
1
2
24-28 29-32 33-36 37-41 42-43
Diastolic BP ≥90 mm Hg Systolic BP ≥140 mm Hg
gestational weeks
adjusted OR

8. Titus Schlinzig,
Mikael Norman et a.
Acta Pediatr 98:7,
2009

9. NIDCAP
Newborn
Individualized
Developmental
Care and
Assessment
Program

10. NIDCAP observation
Agneta Kleberg, Europe’s first
(Master) NIDCAP trainer

11. Implementation at Karolinska
Systems perspective

12. Synactive Model of Developmental Care
Systems perspective
H. AlsH. Als

13. Synactive Model of Developmental Care
H. AlsH. Als

14. Observe

15. interpret

16. Support…

17. … selfregulation, stability,
and possibly interaction

18. NIDCAP promotes resilience by providing
developmentally adequate support during:
 care-giving
 social interaction
 examinations and procedures
The care is governed by the infant’s …
 current stage of development
 current medical condition

19. 0
10
20
30
40
50
60
70
80
90
100
<25 25 26 27 28 29 30 31-
33
CPAPCPAP
MVMV
%

20. Gest. ageGest. age >> 27 – not regionalized deliveries27 – not regionalized deliveries

21. < 27 more proactive, regionalized deliveries< 27 more proactive, regionalized deliveries
< 25 prophylactic surfactant< 25 prophylactic surfactant

22. At birth 25+1, now two days oldAt birth 25+1, now two days old

26. Nice, 2008-10-26
Béatrice Skiöld EAP 2008Béatrice Skiöld EAP 2008
The Stockholm cohort <27 wksThe Stockholm cohort <27 wks
White matter abnormalities on conventional MRIWhite matter abnormalities on conventional MRI
Entire cohort DTI-group z-test/
n=108* n=54 t-test
No WM abnormalities 43 (40%) 24 (44.5%) ns
Mild WM abnormalities 50 (46%) 24 (44.5%) ns
Moderate WM abnormalities 13 (12%) 6 (11%) ns
Severe WM abnormalities 2 (2%) 0 ns
*one MRI excluded due to artefacts

27. 26 wks
25 wks
24 wks
23 wks
22 wks
Survival – live-born infants (n = 707)
acc. to gestational age at birth JAMA 2009

28. 36
46
56
24
38
6
32
5
0
6 6 5
18
6
18 17
13 12 12
6
13
0
10
20
30
40
50
60
VG
region,n=74Linköping,n=41
Ö
rebro,n=16
Stockholm
,n=110U
ppsala,n=78
U
m
eå,n=33
Alla,n=352
BPD
IVH, gr 3-4
ROP, gr 3-4
Morbidity (%) among survivors with gest. age 25-27 weeks
Swedish National Neonatal Register – PNQ (2007-2008).

29. Karolinska-Danderyd
 Level II + - 10 000 inborn deliveries
 Infants > 27 gestational weeks
 INSURE (Intubation, Surfactant, Extubation), CPAP, chest tubes,
catheters etc
 24 beds for infants
 8 beds for mothers in need of medical care – Couplet Care
 12-14 “beds/families” in the Domiciliary Care Program
 870 admitted – 8.7%
7.2% in the neonatal unit
1.5% in the maternity wards (jaundice, hypoglycemia, Down’s
Syndrome …)
 26 (3% of admitted, 2.6‰ of all newborn) referred to Level III
 Perinatal mortality: 3 ‰ – all still births, no mortality during 1st week
 Neonatal mortality: 0.6‰ (national 1.6 ‰) during 1st month

30. Synactive Model of Developmental CareSynactive Model of Developmental Care
H. AlsH. Als

31. Minimize mother infant separationMinimize mother infant separation

35. Skin-to-skin
Born at 24 weeks
Now one week of age

37. Multipregnancies are a challange

40. Synactive Model of Developmental Care
H. Als, 2007H. Als, 2007

41. Family centered care at Level III
Karolinska-Solna

42. Siblings at Level III
Karolinska-Solna

45. Synactive Model of Developmental Care
H. AlsH. Als

46. Samvårdsavdelning 20Samvårdsavdelning 20
Neonatalsektionen Karolinska-DanderydNeonatalsektionen Karolinska-Danderyd

47. Karolinska-Huddinge

53. Small family room when the mother has recovered,Small family room when the mother has recovered,
e.g., from her pre-eclampsia and/or c-sectione.g., from her pre-eclampsia and/or c-section

55. Family lounge.
NB the wireless monitoring of accompanying infant

56. Family lounge. NB the kangaroo position and the leeds
implying a saturation monitor in the mother’s pocket

57. Nurse station with the central for the wireless monitors

58. Nurse with beepers
connected to the
wireless monitors

59. Synactive Model of Developmental Care
H. Als

60. Large family room where we also care for mothers
who are in need of medical care, except intensive care
Couplet CareCouplet Care

61. Large family room where we also care for mothers
who are in need of medical care, except intensive care
Couplet CareCouplet Care

62. Large family room where we also care for mothers
who are in need of medical care, except intensive care

63. Couplet care

65. Does developmental care stop at discharge?

66. Home visits: NIDCAP  IBAIP
(Infant Behavioral Assessment Intervention Program)

67. Synactive Model of Developmental Care
H. Als, 2007

68. Parental benefit – extension of days
180
210
270
360
450
480
0
100
200
300
400
500
600
1974 1978 1982 1986 1990 1994 1998 2002 2006
Children born from 1995 - 30 days can not be transferred to the other parent.
Children born from 2002 - 60 days can not be transferred to the other parent.
Temporary parental benefit when the child is ill
60 + 60 days/ parent and year, can be extended if
there is a life-threatening condition (~< 32+0 wks)
General parental benefit:

69. The Stockholm Neonatal Family
Centered Care Study:
effects on length of stay and infant morbidity
A Örtenstrand, B Westrup, E Berggren Broström, I
Sarman, S Åkerström, T Brune, L Lindberg, U
Waldenström
Karolinska Institute, Stockholm Sweden
Pediatrics Jan. 2010;125: e278–e285

70. Annica Örtenstrand 70
Intervention:
True (?) family centered care
– parents could stay 24 / 7 from admission to
discharge
 parents had a separate room in the unit from the first
day.
 The infants moved from the “acute” room into the family
rooms as soon as they reached a stable state.

71. Infants randomized into the study
Randomized infants
n = 366
with congenital disease: 2
Allocated to family care: 183
Allocated to standard care: 183
(1 infant death)
with congenital disease: 5
Analyzed by
Intention-to-treat: 183
Without congenital disease: 181
Analyzed by
Intention-to-treat: 182
Without congenital disease: 177

72. Annica Örtenstrand 72
Included infants
Family care
n = 183
Standard care
n = 182
Gestational age at birth
24 – 29, n (%) 28 (15.3) 31 (17.0)
30 – 34, n (%) 102 (55.7) 103 (56.6)
35 – 36, n (%) 53 (29.0) 48 (26.4)
Pair of twins 21 24

73. Annica Örtenstrand 73
Length of stay in hospital
Adjusted for: gestational age at birthA
, non-Swedish-speaking backgroundA,B
,
settingA,B
Family care
n = 183
Standard care
n = 182
difference
days
All infants A
, mean 27.4 32.8 -5.3 (p= .05)
By gestational age B
24 – 29 w, mean 56.6 66.7 -10.1 (p= .02)
30 – 34 w, mean 19.2 23.6 -4.4 (p= .16)
35 – 36 w, mean 6.4 7.9 -1.4 (p= .39)

74. Annica Örtenstrand 74
Length of stay in intensive care (level II and level III)
Adjusted for: gestational age at birthA
, non-Swedish-speaking backgroundA,B
,
settingA,B
Family care
n = 183
Standard care
n = 182
difference
days
All infants A
, mean 13.3 18.0 -4.7 d (p= .02)
By gestational age B
24 – 29 w, mean 32.4 43.1 -10.6 d (p= .04)
30 – 34 w, mean 6.0 8.5 -2.5 d (p= .02)
35 – 36 w, mean 1.5 2.5 -1.0 d (p= .24)

75. Annica Örtenstrand 75
Infant morbidity
Adjusted for: gestational age at birth, non-Swedish-speaking background, setting
Family care
n = 183
Standard care
n = 182
OR (95% CI)A
Verified Sepsis, % 7.1 9.8 0.68 (0.3-1.6)
Verified NEC, % 2.7 3.3 0.83 (0.2-2.8)
Diagnosed. PDA, % 15.3 16.9 0.90 (0.4-1.9)
IVH grade II-III, % 3.3 3.8 0.95 (0.3-3.2)
ROP stage II-V, % 2.7 6.6 0.34 (0.1-1.1)
BPD moderate-severe, % 1.6 6.0 0.18 (0.04-0.8)

76. Annica Örtenstrand 76
Ventilatory assistance and supplemental oxygen
Adjusted for: gestational age at birth, non-Swedish-speaking background, setting
All infants
Family care
n = 183
Standard care
n = 182
difference
Respiratory support
n (%) 90 (49) 109 (60) OR: 0.65 (0.4-1.0)
Mecanical ventilation
days, mean 0.6 1.3 -0.7
CPAP,
days, mean 6.5 8.7 -2.2
Supplimental oxygen
days, mean 11.0 12.2 -1.3

77. Family care might operate through the
common pathhways of pain and stress
Parents in Family care may have a greater
opportunity to co-regulate the caregiving with
the needs of the infant
time the care-giving
Parental presence/skin-to-skin may
contribute to better sleep organization

78. Annica Örtenstrand 78
Conclusion
Family care in a level-II NICU, where parents could
stay 24 hours per day from admission to discharge
may reduce …
length of stay for preterm infants
bronchopulmonary dysplasia

79. Time to stop?!
Photo Ann-Sofie Gustafsson, Karolinska NIDCAP Training Center

80. Ultra-Early Intervention
Karolinska-Danderyd, 18 November 2010
Visit the link or google and follow the conference on the internet - in real time
or any time later in toto or in parts for in-house education for staff or at
home on your pc!
http://web22.abiliteam.com/ability/show/khcichp/abbott_20101118/speed.as

81. Staff’s (expert?) opinion

82. The staff’s experience of NIDCAP in
Falun, Sweden
Westrup, Kleberg, Wallin et al. Evaluation of NIDCAP in a Swedish Setting.
Prenatal and Neonatal Med.1997;2:366-75
-5
-4
-3
-2
-1
0
1
2
3
4
5
Parents’:
Presence
Way of care
Attachment
Caregiving plans and
Parents’:
Presence
Way of care
Attachment

83. -5-4-3-2-1012345
-5=moinsbon,0=inchangé,5=meilleur(moyenne+/-é
The staff’s experience of NIDCAP in Brest, France
Mambrini C, Sizun J et al. Implantation des soins de développement et
comportement du personnel soignant.
Arch Pediatr. 2002 May; 9 Suppl 2:104s-106s.
Mean, sd
Parents’:Parents’:
PresencePresence
AttachmentAttachment

84. The staff’s experience of NIDCAP in Brussels
Christine Rémont & Yves Hennequin
(Int. Conf. on Infant Development in Neonatal Intensive Care, London 2003)
Parents’:
Presence
Attachment

85. The staff’s experience of NIDCAP inThe staff’s experience of NIDCAP in LeidenLeiden
Van der Pal, SM et al. Early Hum Dev (2007) 83, 425-432.Van der Pal, SM et al. Early Hum Dev (2007) 83, 425-432.
Parents’:
Presence
Way of caring
Attachment
Caregiving plans and
parents’:
Presence
Way of caring
Attachment

86. Scandinavian NIDCAP Center
NIDCAP in Nordic countriesNIDCAP in Nordic countries
4th Nordic Neonatal Meeting, 20-21 Nov, 20094th Nordic Neonatal Meeting, 20-21 Nov, 2009
Björn WestrupBjörn Westrup
Karolinska Institutet, Stockholm SwedenKarolinska Institutet, Stockholm Sweden
Photo Ann-Sofie Gustafsson, Scandinavian NIDCAP CenterPhoto Ann-Sofie Gustafsson, Scandinavian NIDCAP Center

87. www.nidcap.org

88. NIDCAP Training Centers
US: 10 Ctrs.
EU: 5 Ctrs.
S. Am: 1 Ctr.

89. US Training Centers

90. European Training Centers
UK Ctr
French
Rotterda
m
Karolinska Sthlm
Brussels

91.  ........20th annual NIDCAP Trainers meeting materialspresentationsSa

92. NIDCAP activity in Sweden
Certified
Persons (units)
Trainees
Persons (units)
2007
2006
2005
2004
54(18)
50(16)
45(16)
43(15)
29(10)
28(10)
25(8)
2003 26(11) 37(10)
2002 20(10) 36(12)
2001 17(9) 38(11)
1994 7(4)
1992 3(2)

93. Swedish neonatal units with NIDCAP
(certified professionals or persons in training)
 KUS-Solna,
 KUS-Danderyd
 KUS-Huddinge
 SÖS
 Uppsala
 Lund
 Malmö
 Helsingborg
 Halmstad
 Borås
 Möndal
 Östra
 Falun
 Skövde
 Örebro
 Västerås
 Linköping
 Karlstad
 Trollhättan
 Jönköping
 Växjö
 Kalmar
 Karlskrona
 Umeå
 Östersund
25 units including all universities

94. Norwegian neonatal units with NIDCAP
Sted Introduserte Sertifiserte Trainer-in-Training
Tromsø 4 3
Trondheim 3 3
Levanger 3 2
Ålesund 12 5 2
Førde 2 2
Bergen 4 3
Haugesund 1 1
Stavanger 4 3
Kristiansand 1 1
Lillehammer 2 2
Rikshospitalet 1 1

95. Neonatal units with NIDCAP in other
nordic countries
(certified professionals or persons in training)
Denmark
 Copenhagen 2 prof 2 trainees
 Aarhus 2 prof 2 trainees
 Hvidovre 1 trainee
 Hilleröd 2 prof
4 units including 3
universities units
Finland
 Helsinki 1 trainee
Iceland

96. Scandinavian NIDCAP Center
Scientific context ofScientific context of
family centred developmentallyfamily centred developmentally
supportivesupportive coupletcouplet carecare / NIDCAP/ NIDCAP
4th Nordic Neonatal Meeting, 20-21 Nov, 20094th Nordic Neonatal Meeting, 20-21 Nov, 2009
Björn WestrupBjörn Westrup
Karolinska Institutet, Stockholm SwedenKarolinska Institutet, Stockholm Sweden
Photo Ann-Sofie Gustafsson, Scandinavian NIDCAP CenterPhoto Ann-Sofie Gustafsson, Scandinavian NIDCAP Center

97. Brain development
Evrard P, et al Acta Paediatr suppl 422,20-6. 1997

98. Number of
invasive
procedures
(Barker and Rutter 1995)

99. It is too noisy! Does it matter?

100. Sound and physiological responses
J Long, J Lucey, A Philip. Pediatrics 1980;65:143-45
One week old boy in an incubator, born at 34 weeks, BW 2020g
Heart rate
Sound
level
Respir.
Tc-pO2
Intracran.
pressure

101. Lehtonen L, et al. J Pediatr 2002;141:363-9
Relation of sleep state to hypoxemic
episodes in ventilated ELBW infants

102. Behavioral science:
something for ’docs’?
 "The behavior of the infant is its primary
way to communicate”
(Als – developmental psychologist at Harvard)
 "Behavior is produced by networks of
interacting nervcells”
(Sten Grillner - Neuroscientist at Karolinska
Institute

103. The Synactive Theory
subsystems:
• Autonomic
• Motor
• State-
• Attentional / Interactive
The synactive theory focuses on how
the individual infant handles environmen-
tal experiences, and social interaction
which can be supportive or disrupt the
infant’s balance
Whenever development occurs, it
proceeds to a state of increasing
differentiation
Breathing: irregular, deep or shallow to
smooth and regular.
Movements: become better modulated
and fine tuned;
Sleep-wake states: Diffuse to robust
The infant always strives for integration
of the subsystems.
Appropriate stimulus - infant will move
towards the stimulus
Inappropriate stimulus (timing, too complex
or to intense) – the infant will move away

104. Autonomic-physiologic system
• Circulation
• colour
• respiration
•Bowel movements
•Temperature control
• Tremor, jitternes

105. Motor system

106. State system

107. Attentional and interactive system

108. selfregulation

109. What is the scientific
support, the level of
evidence?

110. Short-term outcome
 A positive impact is indicated on...
Pulmonary morbidity (Als ’94, ’03, ‘04, Fleisher ’95, Westrup
’00, Peters ‘04)
Neurophysiology (Als ’94 & ‘04, Buehler ’95)
and to some degree on...
Head growth (Stevens ’97, Westrup ’00, Maguire ’03, Als 03 )
Brain lesions (Als ’94, Fleisher ’95, Westrup ’00, ’02)
Length of stay (Als ’94, 03 , Fleisher ’95, Westrup ’00, Peters 04)
Costs (Becker ’91, Als ’94,’03, Fleisher ’95, Petryshen ’97, Brown ‘97)

111. Long-term outcome
 A positive impact is clearly indicated on...
Mental development up to 9/12 months
(Als ’94 & ‘04, Ariagno ’97, Kleberg ’02, Peters 08)
and to a some degree on...
Motor development up to 9/12 months
(Als ’94 & ‘04, Ariagno ’97, Kleberg ’02)
Long-term behavior (Kleberg ‘02, Westrup ‘04)
Performance intelligence (Westrup ‘04)
Mother-infant interaction (Kleberg ‘00)

112. Does NIDCAP improve outcome?
Level of evidence
Results of most RCTs point in a positive direction
Most published RCTs are few and with small n:s
Observational studies are also supportive
Clear cut study designs are difficult to achieve
Most follow-up periods are short
Few trials on cost-effectiveness (prim. outc.)
Recommendation
Acquire the “know how” in your nursery
In order to be able to …
Engage in future research

113. Sleep of preterm neonates under developmental
care or regular environmental conditions
0
20
40
60
80
100
120
140
160
180
TST AS QS IS LAT
duration(mn)
DC
CONTROL




V Bertelle, J Sizun et al. Early Hum Dev 2005;81:595-600V Bertelle, J Sizun et al. Early Hum Dev 2005;81:595-600

114. Weighing
 Lift the baby out to the scale wrapped in a soft towel to
help him maintain balance

116. Physiological, behavioral and biological stress expression
during a weighing procedure. Catelin et al. J Pain 2005
0
1
2
3
4
5
6
zero* 5min 30min
score
< 32 w
0
1
2
3
4
5
6
zero* 5min* 30min*
score
0
1
2
3
4
5
6
zero 5 min* 30 min
score
> 37w
* **
*
*
32 > GA < 37w
EDIN
White: dev care
Black: conv. care

117. Salivary cortisol (µg/dl)
0,0
0,2
0,4
0,6
0,8
1,0
before weighing 30 min after weighing
salivarycortisol
DC
Control
< 32 w
> 32 ;< 37w
0,0
0,2
0,4
0,6
0,8
1,0
Before 30 min after
Salivarycortisol
DC
Control
Physiological, behavioral and biological stress expression
during a weighing procedure. Catelin et al. J Pain 2005

118. 0
2
4
6
8
10
12
V O2 V CO2
DC
Control
*
* p<0.01
* * p<0.05
ml/min
* *
Reduced O2 consumption and CO2 production when
supported by developmental care
Impact of Developmental Care on Oxygen
Consumption & CO2 emission in Preterm Neonates
L.Jacquemot, T.Testa, J.Delarue, J.Sizun. Abstract:
18th Annual NIDCAP Trainers’ Meeting Combrit, October, 2007
The Green way

119. Effect from NIDCAP-intervention
during/after eye examination for ROP
Kleberg et al. Lower stress responses after Newborn Individualized Developmental Care and Assessment Program
care during eye screening examinations for retinopathy of prematurity: a randomized study.
Pediatrics. 2008 May;121(5):e1267-78.
 No effect on pain scores
 Salivary cortisol decreased
earlier after NIDCAP-
intervention

120. Intervention scores for ”standard care” approaches
NIDCAP with increasing number of examinations in an
open study evaluating support during ROP-examinations
Examination number in study
706050403020100
Summaryofintervention
60
50
40
30
20
Intervention
NIDCAP
Standard care
Kleberg et al,

121. Support during painful procedures

122. Shield infant from bright light and offer
your finger to suck on

123. Sidelying, flexed position, support of the back
and hands in the midline by the mouth

124. Infants with catheters or chest tubes requires
more visual access but could be supported

126. The Edmonton NIDCAP Trial
Peters et al, Pediatrics Oct 2009
NIDCAP
N=56
CONTROL
N=55
OR
Gestational age 27,5 (1.4) 27.0 (2.3) ns
Birth weight 988.2 (183.7) 927.1 (204.0) ns

127. The Edmonton NIDCAP Trial
Peters et al, Pediatrics Oct 2009
NIDCAP
N=56
CONTROL
N=55
OR
Gestational age 27,5 (1.4) 27.0 (2.3) ns
Birth weight 988.2 (183.7) 927.1 (204.0) ns
Length of stay (mean) 74 84 0.003
Chronic lung disease 29% 49% 0.42
(0.18-0.95)
0.035

128. The LeidenTrial
Maguire et al, Pediatrics Apr & Oct 2009
NIDCAP
N=81
CONTROL
N=83
OR
Gestational age 29.3 (1.8) 29.2 (1.6) ns
Birth weight 1215 (328) 1226 (343) ns

129. The LeidenTrial
Maguire et al, Pediatrics Apr & Oct 2009
NIDCAP
N=81
CONTROL
N=83
OR
Gestational age 29.3 (1.8) 29.2 (1.6) ns
Birth weight 1215 (328) 1226 (343) ns
Length of stay (mean) 41.5 (30.9) 40.4 (37.9) ns
Chronic lung disease 15% 19% ns

130. Early experience alters brain function and structure
Als H, Duffy F, McAnulty G, Rivkin M, Hüppi P et al.
Pediatrics 2004; 113: 846-857
NIDCAP
N: 16
Control
N: 14
Gestational age 31.2
(1.4)
31.8
(1.5)
Birthweight 1648
(232)
1730
(350)
SNAP-PE 8.0
(4.4)
7.4
(3.6)

131. Developmental care, brain structure and function
Als H, Duffy F, McAnulty G, Rivkin M, Hüppi P et al. Early experience alters brain function and structure.
Pediatrics 2004; 113: 846-857
At term
 Better neurobehavioral functioning (APIB)
 Increased cortical coherence (spectral EEG)
 More mature fiber structure (MRI-DTI)
At 9 months:
improved mental, motor and behavioral
function (Bayley Scale of Infant Development-II)

132. EEG coherence: Red=positive/increased, blue=negative,
green=decreased. Als et al 2004.

133. Anisotropy E1/E3 – threshold ≥ 1.3
Arrows –white : Frontal White Matter
black : Internal Capsule (posterior limbs)
at a post menstrual age of 42 weeks
Control (A) NIDCAP (B)
Diffusion Tensor Imaging
BA
Aals H, Duffy F, Rivkin M, Hüppi P et al. Early experience alters brain function and structure. Pediatrics 2004; 113: 846-857

134. Study population
For example …
 Early experience alters brain function and structure
(Als 2004)
Gestational age: ~31 wks; birth weight: ~1700g
 Leiden II
Gestational age: ~29 wks; birth weight: ~1200g
 Edmonton NIDCAP Trial
Gestational age: ~27 wks; birth weight: ~950g

135. Selection/enrolment of subjects – the sample
 Bias of selection?
Inborn / Outborn
 Leiden II: ~60% / 40%
 Edmonton NIDCAP Trial: ~95% / 5%
Periods of stopped enrolment
 Edmonton NIDCAP Trial lost 39 eligible infants due to
investigators were not available

136. Intervention: fidelity and contrast
 Were the infants in the intervention group in Leiden II getting
it?
 ~15 infants were enrolled every month (2/week)
“After inclusion in phase 1 was completed and before starting
inclusion of infants into phase 2, we spent 2 months
providing extra lessons to a team of nurses that would be
primarily caring for the NIDCAP infants. … There were 5
nurses in the group who were completing NIDCAP training
and who became certified and were able to assist under
guidance from the developmental psychologist in carrying
out NIDCAP observations and supporting the care team,
infants and parents”
 Only 21 NIDCAP and 23 control infants stayed more that 1½
month in the study hospitals

137. Intervention: fidelity and contrast
Are the infants in the control group not getting it
is there adequate contrast or
is there a spill-over effect?
Leiden:12 intensive care +17 high care =29 beds (184
infants during 2 years)
 Leiden: 8 intensive care beds and 8 “high care” beds
 The Hague: 4 intensive care beds and 9 “high care” beds
Edmonton: 55 beds (110 infants during 5 years. Only
one of the control infants received NIDCAP-educated
nursing care hours)
The Stockholm experience
The Lund-London experience

138. Intervention scores for ”standard care” approaches
NIDCAP with increasing number of examinations in an
open study evaluating support during ROP-examinations
Examination number in study
706050403020100
Summaryofintervention
60
50
40
30
20
Intervention
NIDCAP
Standard care
Kleberg et al,Kleberg et al,

139. Cultural and demographical context
 Socioeconomic status SES
Leiden II
Education level of the mother
Low 22/66 (33.3%) vs. 19/74 (25.7%)
Intermediate 23/66 (34.8%) vs. 25/74 (33.8%)
High 21/66 (31.8%) vs. 30/74 (40.5%)
Edmonton NIDCAP Trial
SES score (Blishen)
median (range) 41(21-101) vs. 39 (21-101)

140. Long-term effect

141. The Edmonton NIDCAP Trial
Peters et al, Pediatrics Oct 2009
NIDCAP
N=56
CONTROL
N=55
OR
Gestational age 27,5 (1.4) 27.0 (2.3) ns
Birth weight 988.2 (183.7) 927.1 (204.0) ns
Length of stay (mean) 74 84 0.003
Chronic lung disease 29% 49% 0.42
(0.18-0.95)
0.035
Mental delay at 18 months 10% 30% 0.25
(0.08-0.82)
0.017
Severe disability at 24 months 6% 20% 0.25
(0.06-0.97)
0.034

142. The LeidenTrial
Maguire et al, Pediatrics Apr & Oct 2009
NIDCAP
N=81
CONTROL
N=83
OR
Gestational age 29.3 (1.8) 29.2 (1.6) ns
Birth weight 1215 (328) 1226 (343) ns
Length of stay (mean) 41.5 (30.9) 40.4 (37.9) ns
Chronic lung disease 15% 19% ns
Mental delay at 24 months 7.9% 4.0% ns
Severe disability at 24 months 19.1% 12.8% ns

143. Cognitive Indices atCognitive Indices at oneone**
andand fivefive yearsyears
Acta Paediatrica 2004;93:1-10Acta Paediatrica 2004;93:1-10
Bayley Mental Index;Bayley Mental Index;
Wechsler Preschool and Primary Scale of IntelligenceWechsler Preschool and Primary Scale of Intelligence (WPPSI)(WPPSI)
159 1111N =
five yearsone year
Cognitiveindex
140
130
120
110
100
90
80
70
60
50
40
30
20
NIDCAP
Conventional care
*A Kleberg, B Westrup, H Lagercrantz, K Stjernqvist. Early Human Development 2002;60:123-35

144. Performance IQ and mortality at 5 yearsPerformance IQ and mortality at 5 years
(WPPSI-R PIQ, corrected age)(WPPSI-R PIQ, corrected age) Acta Paediatrica 2004;93:1-10Acta Paediatrica 2004;93:1-10
NIDCAP care Conventional care
normal
subnormal
abnormal
deceased
Grading of performance cognition at five years
Pies show counts
n=9
n=2
n=2
n=9
n=2
n=4
n=4
Odds RatioOdds Ratio for surviving …for surviving …
(95% CI)(95% CI)
NIDCAP / ControlNIDCAP / Control P-valueP-value
with PIQwith PIQ >> 7070 6.76.7 (0.7 – >100)(0.7 – >100) 0.110.11
Exact logistic regressionExact logistic regression correcting forcorrecting for gendergender,, gest age,gest age, relative birth-weight, edurelative birth-weight, edu

145. Behaviour and mortality at 5 yearsBehaviour and mortality at 5 years
Subtests of the NEPSYSubtests of the NEPSY test battery: activity and distractibilitytest battery: activity and distractibility
Acta Paediatrica 2004;93:1-10Acta Paediatrica 2004;93:1-10
normal
minor behavioural deficits
significant behavioural deficits
deceased
Behaviour at five year follow-up
Pies show countsn=7
n=3
n=1
n=2
NIDCAP care Conventional care
n=7
n=3
n=5
n=4
Odds RatioOdds Ratio for surviving …for surviving …
(95% CI)(95% CI)
NIDCAP / ControlNIDCAP / Control P-valueP-value
with normal behaviorwith normal behavior 19.919.9 (1.1 – >100)(1.1 – >100) 0.040.04
Exact logistic regressionExact logistic regression correcting forcorrecting for gendergender,, gest age,gest age, relative birth-weight, edurelative birth-weight, edu

146. NEPSYNEPSY
(Korkman M 1990)(Korkman M 1990)
 Neuropsychologic test: two sub tests (level ofNeuropsychologic test: two sub tests (level of activityactivity
andand distractibilitydistractibility ) were used, which can be) were used, which can be
considered as measures of overt behaviour in theconsidered as measures of overt behaviour in the
test situation regardingtest situation regarding
 hyperactivityhyperactivity
 attentionattention
 The NEPSY scale is standardised in Sweden forThe NEPSY scale is standardised in Sweden for
children 4 to 7 years of age.children 4 to 7 years of age.

147. Dev. outcome, child behaviour and mother-child
interaction at three years of age following
NIDCAP intervention.
Falun, Sweden
<1500g
[Kleberg A, Westrup B, Stjernqvist K Early Human Dev 2000;60:123-135]

148. BEHAVIOURAL INTERVIEW*
(*Cederblad-Höök at three years)
CONTROLNIDCAP
BEHAVIORALSCORE
30
25
20
15
10
5
0
INTERNALIZING
EXTERNALIZING
TOTAL
FALUN NIDCAP STUDY NIDCAP Control p-value*
<1500g 1990; n:15 1992-93; n:18
Internalizing 0 (0-2) 2 (0-8) 0.02
Externalizing 2 (0-10) 4 (0-18) ns
Total 6 (0-20) 16 (0-54) 0.03
median (range) * (Mann-Whitney)

149. Family in development, Bonding / attachment

150. Family in development; Bonding / attachment

151. Agneta Kleberg et al,
Early Hum Dev 2007
Staffs’ ability to support her
motherhood
3.5 (2.9-3.9) 3.2 (2.3-3.7) 0.066
Closeness to her infant 4 (3-4) 3.5 (2-4) 0.022
Anxiety 3.1 (2.0-3.7) 2.5 (1.3-3.3) 0.033
Mothers’ opinion NIDCAP
n=10
Control
n=10 P-value
Median (range); Mann-whitney U test if not otherwise indicated;
Fisher’s Exact-test tested for subscales with only one or two items

152. Discussion
Closeness
Anxiety

153. 0% 20% 40% 60% 80% 100%
infant in general
safety of infant
parents participation
physician's working condition
staff's working condition
costs
considerably
positive
positive
none
negative
considerably
negative
no opinion
B.Westrup, K. Stjernqvist, A. Kleberg, L. Hellström-Westas,H. Lagercrantz.B.Westrup, K. Stjernqvist, A. Kleberg, L. Hellström-Westas,H. Lagercrantz.
Seminars in Neonatology 2002;7:447-457.Seminars in Neonatology 2002;7:447-457.
Swedish physicians’ view of NIDCAP’s influence onSwedish physicians’ view of NIDCAP’s influence on ......

154. Observe

155. interpret

156. Support theSupport the …

157. … self-regulation, stability,
and possibly interaction

158. B

159. Dev Care is not a new
science but integrating
natural science with
behavioural science.
Is it now time to let our
actions be geared by
Seeing/observing
and
Respecting?
Giotto 1267-1337
Capella degli Scrovegni, Padova

160. Disability and mortality at 5 years
Acta Paediatrica 2004;93:1-10
NIDCAP care Conventional care
Normal
Impaired without disability
Moderately disabled
Severely disabled
Deceased
Outcome at five year follow-up
Pies show counts
n=4
n=4
n=1
n=2
n=2
n=6
n=1
n=5
n=3
n=4
Odds Ratio for surviving …
(95% CI)
NIDCAP / Control P-value
without disability 14.7 (0.8 – >100) 0.08
Exact logistic regression correcting for gender, gest age, relative birth-weight,
education of parents

161. Overall cognition and mortality at 5 years
(WPPSI-R FSIQ, corrected age) Acta Paediatrica 2004;93:1-10
NIDCAP care Conventional care
normal
subnormal
m-retarded
deceased
Grading of overall cognition at five years
Pies show counts
n=9
n=1
n=1
n=2
n=9
n=2
n=4
n=4
Odds Ratio for surviving …
(95% CI)
NIDCAP / Control P-value
with FSIQ > 70 3.5 (0.5 – 42) 0.29
Exact logistic regression correcting for gender, gest age, relative birth-weight, education of parents

162. The term and healthy
- the vast majority of infants!
A paper to be defended at a dissertation at the Karolinska next month
(examiner: Marshall Klaus)
Effect of closeness versus separation after birth and
influence of swaddling on mother-infant interaction one
year later:
a study in St. Petersburg
Ksenia Bystrova, Kerstin Uvnäs-Moberg, Ann-Marie Widström et al (submitted -
revision)
Indicating the great importance of non-separation during the first
couple of hours

163. Does infant behavior reflect
findings in brain structure?
Structural and neurobehavioral delay in
postnatal brain development of preterm
infants
Hüppi PS et al. Pediatr Res 1996;39:895-01

164. [Hüppi PS et al. Pediatr Res 1996;39:895-01]
 preterm group: 18 infants (30.5+1.8 wk) without
need of mechanical ventilation or suspect neurologic
conditions
 term control group: 13 AGA (39.1+0.9 wk)
Assessed in the1st-3rd wk postnatally & at term with
 MRI
 Assessment of Preterm Infant’s Behavior (APIB) Als
current ability to process environmental input
level of smooth balanced functioning

165. Results:
[Hüppi PS et al. Pediatr Res 1996;39:895-01]
 preterm group:
MRI-findings:
maturation over time with an increase in
gray-white matter differentiation & myelination
delayed in comparison with the term infants
Behavioral findings:
a parallel maturation of the APIB scores
delayed in comparison with the term infants
 increased autonomic reactivity
 increased motor reactivity
 delayed state organization
 delayed attentional availability

166. Risk of High Blood Pressure among
Young Men Increases with Degree of Immaturity at Birth
0
1
2
24-28 29-32 33-36 37-41 42-43
Diastolic BP ≥90 mm Hg Systolic BP ≥140 mm Hg
Gestational Weeks
AdjustedOR
Johansson, Iliadou, Bergvall, Norman et al. Circulation 2005:112:3430-3436

167. Kangaroo-
Mother-
Care
Dean 24+6
Now one week

169. Kangaroo Mother Care Bogota
VLBW infants: Skin to skin 24 hrs/d, early discharge and frequent,
regular out-patient check-ups
Aim: lower mortality/morbidity
support the bonding and prevent abandoning
support breast feeding
Whitelaw & Sleath 1985, Gomez, Sanabria, Marquette 1992

170. Kangaroo Mother Care
Juan G. Ruiz - Nathalie Charpak, Bogota Colombia
(Pediatrics 1997, 1998, 2001. Infant Behaviour and Development 2003
benefits in:
 mortality
 early infectious morbidity
 growth and development
 promotion and maintenance of breast feeding
 a healthy bonding between mother and infant
 a better cranial growth
 neurodevelopment
 the provision of nurturing home environment
Applicable in more affluent societies? More research!!

171. Videoclip:
Transition from
skin-to-skin to incubator

172. RCT of skin-to-skin contact from birth
versus conventional incubator care for
physiological stabilisation in
1200 - 2199-gram newborns.
Cape Town, South Africa
Bergman NJ, Linley LL, Fawcus SR.
Acta Paediatrica 2004, 93(6); 779-785

173. SCRIP
SCORE
2 1 0
Heart rate Regular Deceleration
to 80-100
Rate <80 or
>200 bpm
Respiratory
rate
Regular Apnea <10s,
or periodic
breathing
Apnea >10s
Tachypnea
>80 pm
Oxygen
saturation
Regular >87% Any fall to 80
– 87%
Any fall below
80%
Stability of Cardio-Respiratory system In Preterm Infants
Score allocated for a five minute period of continuous observation,
maximum six for period. (Fischer et al,
1988)

174. Background characteristics
Minimisation technique ensured groups balanced
for confounders.
( n = 34) Kangaroo-Mother- Conventional-Mother-
Care KMC Care CMC
Mean BW 1813g 1866g
Mean GA 34.2w 35.3w
Approp’ GA 65% 64%
Male 60% 50%
Bergman NJ et al, Acta Paediatrica 2004, 93(6); 779-785

175. STABILIZATION TREND.
SKIN-TO-SKIN (KMC): STABLE AT 6 hours
INCUBATOR INFANTS (CMC) REMAIN UNSTABLE,
WITH NO TREND TO STABILIZATION.
BIRTH RCT - SCRIP SCORES
4
5
6
60min 90min 120min 150min 180min 210min 240min 270min 300min 315min 330min 345min 360min
KMC CMC
Bergman NJ et al, Acta Paediatrica 2004, 93(6); 779-785

176. Stabilisation first 6 hours, average hourly SCRIP score
5.1
5.2
5.3
5.4
5.5
5.6
5.7
5.8
5.9
6
6.1
2nd 3rd 4th 5th 6th
KMC all
KMC <1800
CMC all
CMC <1800
Bergman NJ et al, Acta Paediatrica 2004, 93(6); 779-785

177. The Stockholm Family Study
A Örtenstrand, B Westrup, E Berggren Broström, I Sarman, S Åkerström, T Brune,
L Lindberg, U WaldenströmKarolinska Institute
N= Family Care Standard Care
182 183
Total length of hospital stay was reduced by 5.3 days:
mean 32.8 (95% CI:29.6-35.9) days vs. 27.4 (23.2-31.7) days
(p=0.05).
Moderate to severe BPD
1.6% vs 6.0% (adjusted OR 0.18; 95% CI: 0.04-0.8).

178. Moderately preterm infants and determinants of
length of hospital stay
M Altman, M Vanpée,S Cnattingius, M Norman
Arch Dis Child Fetal Neonatal Ed 2009;94:F414–F418
Population-based cohort including 2388 infants (2004–2005)
with a gestational age of 30–34 weeks and admitted to 21
NICU:s reporting to the Swedish perinatal register.
 Mean postmenstrual age (PMA) at discharge differed 2 weeks
 Perinatal risk factors had small overall impact (R2
: 13%) (explains 13% of
the variation)
 Organizational factors in combination with perinatal risk factors had a
greater impact: R2
: 21% (explains 21% of the variation).
 Infants treated at NICU without fixed discharge criteria: -4.7days PMA
 infants receiving domiciliary care: -9.8 days PMA
 Breastfed infants also had lower PMA at discharge: -2.7 days PMA
(partly explained by lower morbidity in the breastfed infants)

179. Outline
 Patient flow
Delivery
Maternity
Neonatal nursery
 Family centered care
 Couplet care
New units design plans
Team work
Coaching
Revenue issues

180. Delivery and maternity at Karolinska-
Danderyd
 Approx 10,000 deliveries / year
230 twins, 3 triplets
400 born prematurely - 5.8%

181. Delivery and maternity at Karolinska-
Danderyd
 Approx 10,000 deliveries / year
230 twins, 3 triplets
400 born prematurely - 5.8%

182. Delivery and maternity at Karolinska-
Danderyd
 Planned C-sections: 16 beds for 26 c-sections/week
LOS: two days
week-ends closed

183. Delivery and maternity at Karolinska-
Danderyd
 Approx 10,000 deliveries / year
230 twins, 3 triplets
400 born prematurely - 5.8%
 Planned C-sections: 12 beds for 18 c-sections/week
LOS: two days
week-ends closed
 Maternity and prenatal care: 24 beds

184. Delivery and maternity at Karolinska-
Danderyd
 Patient Hotel; 24 beds
Uncomplicated delivery admitted after 2-6 hours after delivery
Midwifes on each shift
LOS: 2 nights for primipara. One night for multipara

185. Delivery and maternity at Karolinska-
Danderyd
 Approx 10,000 deliveries / year
230 twins, 3 triplets
400 born prematurely - 5.8%
 Planned C-sections: 12 beds for 18 c-sections/week
LOS: two days
week-ends closed
 Maternity and prenatal care: 24 beds
 Patient Hotel; 24 beds
Uncomplicated delivery admitted after 2-6 hours after delivery
Midwifes on each shift
LOS: 2 nights for primipara. One night for multipara

186. Karolinska-Danderyd
 8 beds for mothers in need of medical care – Couplet Care
 Mean cencus 3.4 mothers (42%)
 Mean length of stay 1.7 days

187. Dept of Neonatology
at the Karolinska University Hospital
 Three NICU:s
(Solna, Danderyd & Huddinge)
 22 000 births/year, approx 2500 admittances/year
 5% < 37 weeks
 74 beds
14 beds for mechanical ventilation
 37 rooms for families within the units
Only 30 with private bathrooms
 Political decision to provide family rooms for
everyone

188. Vanpee et al Acta Paediatrica 2007;96:10-16

189. Practice style for resuscitation
Inborn infants with GA <28 wks, 07/2001 to 06/2003
Boston
n = 70
Stockholm
n = 102
P value
Bag/mask ( %) 59 (84) 79 (77) ns
Intubation () 70 (100) 45 (44) P < 0.000
CPAP only (%) 0 (0) 21 (21) P<0.0001
Surfactant
# doses
2.3 1.5 P<0.0001