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Functioning of very preterm born children at preschool age: Follow-up of an early interventionprogramme

Verkerk, G.J.Q.

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Citation for published version (APA):Verkerk, G. J. Q. (2014). Functioning of very preterm born children at preschool age: Follow-up of an earlyintervention programme.

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Chapter 1

General introduction

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General introduction | 9

1This thesis aims to contribute to improvements in the care of children born preterm with a

gestation of less than 32 weeks and/or a birth weight below 1500 grams (VLBW). This thesis

compares aspects of development of a cohort of VLBW children with their term born peers at

44 months of corrected age (CA). The VLBW children of this cohort participated in a randomised

controlled trial which examined the effect of an early neurobehavioural intervention: The Infant

Behavioral Assessment and Intervention Program (IBAIP) ©. This thesis also describes the effects of

the IBAIP at 44 months CA.

Very Low Birth Weight Infants

Due to advances in perinatal and neonatal care, increasing numbers of VLBW children are

born alive 1;2.The mortality rates of those children born extremely preterm, defined as born

with a gestational age (GA) of less than 28 weeks, are decreasing 3-5. Each year approximately

2500 VLBW infants are born alive in the Netherlands 6-8. In the future, assuming that the shift in

viability towards a younger gestational age (≤ 24 weeks) will continue, 9, the number of VLBW

infants who survive, receive neonatal intensive care and are discharged from hospital, will almost

certainly increase.

Development of VLBW infants

VLBW infants are at risk of severe impairment(s) such as cerebral palsy (CP), visual and/or

hearing impairment and cognitive difficulties. However, the rate of severe impairment in VLBW

infants is declining 10-12, and the care of VLBW infants is now more focused on decreasing the

impact of moderate impairments (minor neurological dysfunction) and/or combinations of mild

impairments 13-17. These moderate impairments occur more frequently than severe impairments

and a combination of mild impairments can impact on an infant’s capacity to use compensatory

strategies.

VLBW infants may be delayed in their motor or cognitive development, for example: in

their ability to change positions and move, in their learning capacity, and their ability to interact

with their environment 13;18-21. VLBW infants may continue to experience difficulties throughout

childhood. With regard to motor development 22;23, visual motor integration and visual perception 24, VLBW children are shown to be at a disadvantage. In addition, VLBW children are also at a

disadvantage with regard to mental functioning, for example: impaired language development 25, cognition 26, executive functioning 27 and attention 27;28. Behaviour problems 29 and psychiatric

disorders 30;31 are also found more often in VLBW children. At the time of school entry it is not

clear whether these disadvantages negatively affect the ability of VLBW children to achieve their

learning potential. However, VLBW children tend to have lower levels of academic attainment

than their term born peers 32-34.

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The risk of impaired development continues until adult age. Despite that the majority of

VLBW adolescents have similar levels of health and well being as their term born peers at 20

years of age 35-37, several studies have reported other problems at adult age. For example, VLBW

adults tend to be less physically active during leisure time 35 and are three times more at risk

of unemployment or non-participation in education at 19 years of age compared to their term

born peers 38. Furthermore, the longitudinal study: Project on Preterm and Small for gestational

age infants (POPS), in the Netherlands, showed that young adults who were born very preterm

had impairments in multiple domains 38. Compared to term born peers, VLBW adults have less

physical resilience 37;39, perform less well on motor 40, cognition 41;42, attention 43;44, executive

functioning 42 and have more psychiatric disorders 45-47.

Thus, the disadvantages for VLBW infants compared to term born peers continue into adulthood.

Factors influencing development

During the last trimester of gestation, the size of the brain increases four fold 48 and in

this trimester axonal development and the development of myelin producing oligodendrocytes

progresses rapidly 49. In VLBW infants these fast developmental changes happen outside of the

womb’s protection. Therefore, VLBW infants are at risk of impaired brain development 50-56 and

consequently problems in psychomotor development 50;57-59.

Several risk factors play a role in the origin of developmental difficulties in VLBW infants: shorter

gestation 26;60;61, lower birth weight 62-64, necrotising enterocolitis 65, sepsis 66, intraventriculair

hemorrhage (IVH) 67;68, periventricular leukomalacia 49, bronchopulmonary dysplasia (BPD) 69, a

low parental socio-economic status 70;71 and male gender 70;72.

A preterm birth can impact significantly on family functioning 73;74. Mothers of VLBW infants

tend to experience more stress 75;76, have a lower health related quality of life 77 and suffer more

often from depression and anxiety 78. Parenting a VLBW infant can be more demanding than

parenting a term born infant because VLBW infants are at risk of multiple regulatory problems

concerning feeding, excessive crying and/or sleeping 79. In addition, VLBW infants can show

behaviours which are difficult to read for parents 80, which is attributed to neurological immaturity

in VLBW infants 80. Unclear behavioural signs and regulatory difficulties of the infant and high

levels of stress and depression of the mother negatively influence the parent-infant interaction.

Developmental outcomes for VLBW infants are likely to be determined by complex relationships

and interactions between these biological and environmental factors 81.



1Optimal nurturing conditions may support the development and self-regulation of VLBW

infants. Responsive parenting is considered to be a crucial factor for helping to ensure optimal

parent-infant interaction and attachment 82;83. Responsive parenting involves a level of interaction

in which parents consistently exhibit high levels of warmth and acceptance towards their children

and regard them as unique individuals 84. At the same time the parents also exhibit cognitively

responsive behaviours towards their children via, for example, rich language input and maintaining

the child’s attention 84. These responsive behaviours are contingently linked to the child’s signals 84. Research has shown that responsive parenting has a positive effect on the cognitive and social

development of the child 85-88. Supporting a parent’s capacity to respond appropriately to their

child may therefore be a key area for targeted intervention.

Interventions for VLBW infants

In the past decennia, several early intervention programmes have been developed which aim

to optimise the neuro-behavioural development of VLBW infants. The best known, and most

often used intervention is the Newborn Individualized Care and Assessment Program (NIDCAP)

which is used in the neonatal intensive care unit (NICU) 80. The NIDCAP aims to minimise the

mismatch between the premature infant’s brain expectations and the experience of stress and

pain in the NICU 89. NIDCAP promotes an appropriate physical environment in the NICU for

infant and family; adapts the timing and organisation of medical and nursing interventions to the

individual needs of each infant and family, and supports the parents’ capacity to nurture, cherish

and take pride in supporting their infant’s development 90. Several systematic reviews have shown

that NIDCAP is effective for enhancing the development of VLBW infants 91-93, although a recent

systematic review concluded that there is insufficient evidence to show that NIDCAP improves

long-term neurodevelopmental and short-term medical outcomes 94. In addition, a small RCT

recently found better brain functioning and brain structure in those VLBW infants who received

NIDCAP 95. However, long term follow-up studies of RCTs are still missing. These studies are

required, for example, to determine the long term benefits for VLBW children and to justify the

cost of the interventions 94.

Infant Behavioral Assessment and Intervention Program© (IBAIP)

Besides the NIDCAP which is used in hospitals, several early developmental intervention

programmes aim to enhance infant development after discharge from hospital. Post-discharge

early intervention programmes for preterm (<37 weeks) infants have a positive influence on

cognitive and motor outcomes during infancy, with cognitive benefits persisting up to 5 years

of age 96. Specifically, interventions that focus on both parent-infant interaction and infant

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development have been found to be effective 96. However, for determining the long term effect

of post-discharge early intervention programmes, RCTs with long term follow up are required 97;98.

One of the post-discharge early intervention programmes is the IBAIP: Infant Behavioral

Assessment and Intervention Program 99. The IBAIP and the NIDCAP are both based on the

Synactive Model of Newborn Behavioral Organization and Development 80;99. This model

recognises that the infant’s autonomic, motor, state and attention/interaction systems are

continuously interacting with each other and the environment. The infant actively shapes his

or her own environment by selecting information, reacting to this, and initiating and eliciting

action in others. This neuro-behavioural process is visible in approach behaviour, self-regulatory

behaviour and stress behaviour of the infant.

In the IBAIP, the neuro-behavioural competence of the infant is assessed with the Infant

Behavioral Assessment (IBA) 100. The IBA is an observational tool that evaluates the infant’s neuro-

behavioural organisation during interactions of the infant with his or her environment. The IBA

contains satisfactory psychometric properties in VLBW infants 101. The IBA discriminates between

113 well-defined behaviours in the autonomic, motor, state, and attention/interaction subsystem

of neuro-behavioural functioning. Within the IBA the infant’s behaviour is interpreted in relation

to his or her capacity to approach information, exhibit stressful behaviour, and self-regulate during

interaction. Self-regulatory behaviours are utilised by the infant in order to concentrate, cope

and/or console him or herself 101. When self-regulatory behaviours are accompanied by a higher

amount of approach behaviours the infant’s self-regulatory competence may be considered to

be more optimal. When regulatory behaviours are accompanied by a higher amount of stress

behaviours, self-regulatory competence may be considered to be less optimal.

The IBAIP interventionist uses the IBA to sensitise parents to the way in which their infant

processes environmental information, because sensitive and responsive parent-infant interaction

is beneficial for the development of the VLBW infant 85;102;103. The IBAIP interventionist helps

parents adjust the environment to their infant’s neuro-behavioural needs and to offer co-

regulatory support during their infant’s interactions. As this co-regulatory support focuses on

midline orientation (e.g. bringing hands together and hands to mouth), which enhances postural

control (e.g. head and body righting in different positions), it also addresses specific motor

problems in VLBW infants 104. The IBAIP interventionist gives parents detailed information about

their infant’s development, in order to strengthen the parents’ capacity to guide their infant’s

subsequent developmental steps and to support realistic expectations of their child’s functioning 105. The programme aims to strengthen the parent’s mindful attention towards their infant’s

behavioural expressions and development, which may enhance their emotional availability,

intrinsic motivation, feelings of joy and confidence in themselves and their child 105.



1Effectiveness of the IBAIP

In January 2004 a multi-centre RCT was undertaken to investigate the effectiveness of

the IBAIP. VLBW infants were included until April 2006. In this study, the intervention infants

(N=90) and their parents received 1 IBAIP session shortly before discharge, followed by 6 to 8

interventions at home, until the infant was 6 months of corrected age (CA). The control infants

(N=86) received standard care and, when required, non-IBAIP trained paediatric physical therapy.

Regular outpatient visits to the paediatrician were standard in both the intervention and control

groups.

Results of the IBAIP

The children from the intervention group demonstrated significantly better motor, mental,

and behavioural outcomes compared to the control group at 6 months CA 104. In addition, the

mothers who had received IBAIP responded more sensitively when interacting with their infants,

compared to the mothers in the control group 106.

At 24 months CA, the intervention group demonstrated better motor outcomes compared to

the control group, but the mental and behavioural outcomes did not differ significantly from the

control group 105. However, the intervention had a positive impact on mental development in high

risk subgroups of infants with bronchopulmonary dysplasia and those with combined biological

and social risk factors 105.

Follow-up study of the IBAIP at 44 months

In order to evaluate whether the positive effects of the IBAIP were sustainable, this cohort

was reassessed at 44 months CA. This is an important time of transition for children in the

Netherlands, in that they start school at 48 months of uncorrected age. This transition to school

is a stressful experience for many children 107 and there is an absence of research in this area

pertaining to VLBW children. School-readiness includes several areas: physical, cognitive and

social as well as a positive attitude towards learning 108;109. Participating in a large peer group in

school demands a number of skills, e.g. appropriate levels of motor coordination, being able to

perform routine daily activities and being able to adjust to the behavioural and social norms of

the school. To summarise, it is not clear whether the levels of physical, cognitive and social skills

in VLBW children are sufficient for coping with the demands of school life.

A comprehensive assessment was therefore collated which could be completed at home.

Assessments were performed at home to avoid the extra stress of being assessed in hospital

and to make participation in this study easier for parents and children. Mindful of the limited

capacity of 4 year old children to carry out assignments on request, the assessment of each child

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took less than one hour. In addition, the parents completed questionnaires which related to

every-day behavioural situations of their child and were interviewed about their child’s level of

independence in daily activities. The investigator (GV) also systematically observed the behaviour

of the children during testing. The comprehensive assessment evaluated: word comprehension;

visual motor-integration including visual perception and motor coordination; cognitive skills, for

example, copying, problem solving and constructing; executive functioning including attention;

sensory processing, and levels of independence in daily activities. In addition, behaviour problems

were assessed.

In order to compare the performance of the VLBW children of the RCT with term born

children, the Amsterdam Public Health Service sent 200 letters to parents of children who would

reach 44 months within a few months. The comparison group of term born children and their

parents were matched with the VLBW group for gender, having a low educated mother and

having a mother born abroad.

Objectives and outline of this thesis

This thesis has 2 objectives.

The primary objective of this thesis is to evaluate the effect of the IBAIP at preschool age of 44

months CA. The VLBW children were extensively assessed in the domains of executive functioning,

behaviour, cognition, motor coordination, sensory processing and daily activities. Regarding this

primary objective the main question is: which aspects of development are positively influenced by

the IBAIP at preschool age?

The secondary objective is to compare outcomes of the VLBW children of the RCT with term

born peers. Regarding this objective the main question is: in which aspects of development do

VLBW children at preschool age differ from term born peers?

The primary objective is addressed in chapters 2 and 3 and the second objective is addressed in

chapters 2,3,4,5 and 6.

Chapter 2 describes the effect of the IBAIP on sensory processing and daily activities at

preschool age. The performance of the VLBW children who received the intervention is compared

with the VLBW children of the control group. Comparisons with term born peers are also made.

Chapter 3 presents the results of the IBAIP on executive functioning, motor coordination,

behaviour and cognition at preschool age. In addition, comparisons with term born peers are

made.



1Attention problems hinder overall cognitive productivity 110 and interfere with academic

development 111 thus it is important to identify these problems. Chapter 4 sets out the

performance of VLBW preschoolers compared to term born peers on measurements of attention

from 3 different sources: children’s performance on attention tasks, questionnaires completed by

parents and behavioural observations by the investigator. In addition, the association between

lower attention at preschool age and educational provision at 5½ years is evaluated.

It is useful to known whether VLBW children experience limitations in those daily activities

which are important for participating in family life and with their peers when approaching school

entry age. Chapter 5 evaluates whether VLBW children have limitations in daily activities when

they start school and whether assessments at 24 months can predict these limitations in daily

activities.

VLBW children are found to have combined difficulties in several developmental domains which

appear to impede their academic performance at school age 14;16;17;112. Therefore, in Chapter 6

the VLBW children are compared to their term born peers with regard to multiple mild difficulties

in several aspects of development. In addition, the association between developmental difficulties

at 44 months CA and educational provision at 5½ years CA in VLBW children is explored.

Chapter 7 presents a general discussion and conclusions. Suggestions for improving the care

of VLBW children and further research are given.

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