A
Ten Year Follow-up of Extremely Preterm infants: Health, behaviour,
cognitive development and school achievement outcomes
Karin
Stjernqvist, Assistant Professor, Ph.D
Dept. of Psychology, Lund University, S-22000, Lund, Sweden.
E-mail:Karin.Stjernqvist@psychology.lu.se
During the last decade, several studies have reported poor school
performance in extremely preterm infants (EPT). According to this
body of research, developmental outcome is related, among other
things, to maternal education and family income and research in
different countries indicates that extremely preterm infants are
over-represented in socially disadvantaged families. It is therefore
important that follow-up studies be population-based and be conducted
in countries with different socio-economic structures. The aim of
this Swedish study was to compare the health, cognitive and behavioural
development and school achievement of extremely preterm infants
at 10 years of age with a matched sample of 10-year old children,
who were born healthy and were full-term (FT).
Methods
In a south Swedish town, 32,120 infants were born during a two-year
period 1985 to 1986. One hundred and twenty-one infants (0.4%) were
reported live born before the 29th gestational week. Sixty-five
infants (50%) survived up to the age of 10 years. (See table 1)
The catchment area has one regional tertiary centre and 10 community
hospitals, 8 level II and 2 level I hospitals. The children were
recruited in the pre-surfactant era. When the Extremely Preterm
children were 10 years old, the parents were invited to participate
in the follow-up study. Sixty-one of the 65 children, participated
in the ten-year follow up study. Parents of full term children from
the same region of the same sex and with the date of birth closest
to the study child were approached to participate in the study.
The children were assessed with a test battery by a psychologist
who was blind to group affiliation. To assess their cognitive abilities,
the Wechler Intelligence Scale for Children, WISC-III, was used.
To assess visual-motor abilities, the Developmental Test of Visual-Motor
Integration, VMI, was used and the standard score was calculated.
A paediatrician reviewed the childrens medical record. The
children were assessed at the regional centre and were accompanied
by at least one parent, usually the mother. Behavior and attention
were assessed by questionnaires filled in by the parents. The Child
Behavior Checklist, CBCL, was used to assess behavioral development.
(According to Swedish norms, the cut-off score for manifest behavior
problems is 30).). The Home Situation Questionnaire, revised, HSQ-r,
was used for measure evidence of attention-deficit hyperactive disorder
(ADHD). A score above 2 in more than 8 of the 14 items exceeds the
Diagnostic Criteria from DSM-IV cut-off for a diagnosis of ADHD.
The parents also completed a questionnaire about their socio-economic
background, the family composition and the childs health.
The parents were asked for their consent to allow the Teachers
Report Form (TRF) to be sent to the childs classroom teacher.
At the time of follow-up, the EPT children were
10.5 years of age, while the FT children were10.6 years old. All
scores were calculated based on the childs chronological age.
The extremely preterm group and the full term control-group were
similar in family composition, number of siblings and immigrant
status.
Ten-Year Outcomes
Health
Ten per cent of the EPT-children had small intraventricular
haemorrhages (IVH) and 11% had big bleeds as assessed by ultrasound
in the newborn period. Four children, all with IVH grade III or
IV, had cerebral palsy and 3 of these also had visual impairments,
and 1 child had a severe hearing impairment. The EPT children were
on average 5 cm shorter, 142.2 cm for the EPT children as compared
to 147.0 cm for the FT children. The EPT children also had lower
weight, on average 4 kg, 33.4 (7.6) kg vs. 37.6 (7.2) kg for the
FT children (p<0.01) and had a smaller head circumference, 53.1
(1.8) cm vs. 54.2 (2.1) cm, than the FT controls (p<0.05). There
were no differences between the groups in visits to a physician
during the last twelve months. The need for visual correction with
glasses was greater among the EPT children, 25 vs. 7 (p<0.001).
Development and school achievement
The EPT children had a mean IQ score of 90 (SD, 15), while the
FT children had a mean IQ score of 106 (SD, 15) (p<. 0001). (See
table II) On the test of Visual Motor Integration, the EPT children
had a mean score of 93.3 (SD, 12.2), while the Full-term group had
an n average score of 109.6 (SD, 14.2) (p<. 0001). On both tests
the differences between the groups corresponded to approximately
one standard deviation. The IQ results and the results on the VMI
test for the EPT children did not correlate with birthweight, gestational
age, and birthweight for gestational age or perinatal events such
as ventilator treatment, bronchopulmonary dysphasia (BPD) and length
of hospitalisation.
Thirty-eight percent of the EPT children performed below grade
level at school. (See table III) Thirty-two percent had general
behavior problems and 20% had attention deficit with hyperactivity
disorder as compared to 10% and 8%, respectively in the FT group.
Ninety-two per cent of the EPT children vs. all FT children were
attending school within the normal school system. Thirty percent
of the EPT children and 1.6% of the FT children received special
education (p<0.001) and thus 66 % of the EPT children vs. 95%
of the FT children (p<0.001) were in mainstream education at
an age-appropriate level without extra support. Thirty-eight percent
of EPT children and 12% of the FT children performed below grade
level.
Behaviour
As measured by the CBCL, the EPT children had more general behaviour
problems than the FT children. (See table IV) A comparison of the
mean scores on the CBCL, yielded significant differences between
the EPT and FT scores, 26.1 (SD, 18.2) v. 15.5 (SD13.6) (p<.
001). Thirty two percent of the EPT children and 10% of the FT children
met the criteria for manifest behaviour problems (p<0.01). Twenty
per cent of the EPT and 8% of the FT children (p<0.05) had ADHD,
according to DSM-IV criteria.
NBAS and 4 and 10 year outcome
A subgroup of 17 EPT-children has been followed prospectively since
birth. At term, when the EPT children were 10-16 weeks old, the
NBAS was performed. At 4 years of age they were tested with the
Griffith Scales and at 10 with the WISC III. The correlation
between the NBAS Social-Interactive cluster and DQ at 4 years was
0.42 (p<0.05) and the IQ at 10 years was 0.62 (<0.01)
Healthy children with cognitive and behavioural problems
This is the first long-term follow-up study of school achievement
of EPT children in the Scandinavian countries. Despite the fact
that the majority of the EPT children had good health and were being
raised in a low-risk environment, their IQ scores were approximately
one standard deviation lower than those of the FT controls. Forty-three
per cent of the EPT children had a cognitive development score in
the subnormal range, IQ<85, which was reflected in their academic
achievement. More than one third of the EPT children performed below
grade level at school and 30% of the children who attended mainstream
schools received special education. More than half of the EPT children
with IQs below 70 were not previously identified as mentally retarded
either by parents or by their teachers. They went to mainstream
schools and some of them did not even receive special education.
Thus there is reason to assume that some EPT children do not have
adequate support at school. Most teachers did not know that the
pupil was a preterm child, since the parents did not consider the
preterm birth as an event that might have long-term impact on the
childs cognitive ability.
It is interesting that the infants early ability to orientate inanimate
auditory and visual stimuli and to the human voice and face in the
newborn period is associated with later cognitive development. These
results are under further investigation.
We did not find any correlation between gestational age or birthweight
and IQ or the visual motor functioning. It seems that extreme prematurity
per se, displaces the normal variation curve for intelligence
approximately one standard deviation below. There is already considerable
brain development taking place during the gestational period of
24 to 40 weeks. The neonatal intensive care experience for these
children took place when changes were being introduced to reduce
stimulation but still improvements in stimuli adaptation must be
considered. Other possible causes of these deficits could be nutritional
factors, instability in brain perfusion and oxygenation.
We found a relatively low incidence of attention deficit hyperactivity
disorder, ADHD, in the group of EPT children (20%) as compared to
other studies. For the FT control group the prevalence in our study
was 8%, which is in accordance with the figures for the general
Swedish population.
Almost every third EPT child compared to every tenth FT child in
the present study met the criteria for manifest psychiatric disorders.
The behavioural problems could partly be understood as symptoms
of minor neurological sequelae but also can be understood as a psychological
consequence of parental insecurity in raising a very preterm child.
Many studies have reported difficulties in mother and child interaction,
during the childs first year, as a result of the unclear communication
signals the EPT infants send to their caretakers compared with fullterm
healthy children. The EPT child is also often a difficult child
during the first year of life, with insufficient self-regulation
leading to feeding and sleep disorders. Later in development, parents
might have difficulties in meeting the childs needs at his
or hers developmental level, since many children might be less talented
than expected in the family compared with, for example, the siblings.
It is however important to stress that 85% of the EPT children are
developing within the normal range (> -2SD), but with lower IQs
than their peers, and that every forth child has an appropriate
level of cognitive development and every fifth child performs above
grade level at school.
It is obvious that interventions at different levels are needed
to support EPT childrens development. Besides continuous improvements
in medical care, more directed individualized developmental care
in the neonatal period is needed. Long-term intervention programmes
aiming to give parents a better understanding of the characteristics
of EPT childrens development are also warranted. This could
encourage parents to become better advocates for their children.
The increased understanding of the childs needs and their
capacities might improve their development and diminish behavioural
problems. At a later age, individualized care plans in school settings
seem necessary.
(References are available from the author)
Table I
Perinatal data for extremely Preterm (EPT) and Fullterm (FT)
infants
| |
EPT
|
FT
|
|
Girls/boys
|
36/25
|
35/26
|
|
Birthweight (g), mean (SD)
range
|
1042 (242)
500-1480
|
3648 (533)
2530-4990
|
|
Gestational age (wk) mean (SD)
range 23-24
25-26
27-28
|
27.1 (1.03)
1
11
49
|
40.1 (1.43)
|
|
Maternal age (yr) mean (SD)
range
|
28.0 (5.7)
17 - 43
|
- (4.5)
20 - 41
|
|
Infants born at the regional centre
|
22 (36% )
|
|
Infants transferred to the regional centre
|
27 (44% )
|
|
Infants treated at community hospitals
|
12 ( 20%)
|
|
Small for gestational age
|
9 (15%)
|
| |
|
|
Hospital stay (days) mean (SD)
range
|
91 (40)
56 - 364
|
|
Mechanical ventilation
|
33 (54%)
|
|
BPD
|
11 (18%)
|
|
Cerebral ultrasonography (n=59)*
|
|
|
Grade I or II
|
6 (10%)
|
|
Grade III or IV
|
7 (11%)
|
| |
|
* IVH, interventricular haemorrhage according to
the grading of Papile (7).
Table II
Test Results of Cognition for Extremely Preterm (EPT) and Fullterm
(FT) children
|
|
EPT
n=58
Mean (SD)
|
FT
n=61
Mean (SD)
|
p
|
95% CI
|
|
Test of cognition
|
|
|
|
|
|
WISC-III-R
|
|
|
|
|
|
Verbal IQ
|
94.9 (15.4)
|
107.3 (13.2)
|
0.001
|
-17.70;-7.19
|
|
Performance IQ
|
86.3 (14.1)
|
103.6 (15.8)
|
0.001
|
-22.79;-11.86
|
|
Full-Scale IQ
|
89.8 (15.1)
|
106.5 (15.0)
|
0.001
|
-22.17;-11.20
|
|
WISC-R Subtest
|
|
|
|
|
|
Verbal
|
|
|
|
|
|
Information
|
7.3 (2.7)
|
10.6 (2.9)
|
0.001
|
-4.33;-2.26
|
|
Similarities
|
7.4 (3.3)
|
9.5 (2.7)
|
0.001
|
-3.17;-0.94
|
|
Arithmetic
|
8.0 (2.7)
|
9.7 (2.8)
|
0.001
|
-2.72;-0.73
|
|
Vocabulary
|
6.3 (2.8)
|
8.3 (2.4)
|
0.001
|
-2.91;-1.05
|
|
Comprehension
|
8.8 (2.8)
|
10.8 (2.8)
|
0.001
|
-3.00;-1.50
|
|
Performance
|
|
|
|
|
|
Picture completion
|
9.5 (3.1)
|
11.1 (2.6)
|
0.01
|
-2.67;-0.57
|
|
Picture arrangement
|
8.5 (3.3)
|
10.9 (3.1)
|
0.001
|
-3.54;-1.22
|
|
Block design
|
6.3 (3.4)
|
10.4 (3.9)
|
0.001
|
-5.37;-2.72
|
|
Object assembly
|
7.3 (2.6)
|
9.8 (2.9)
|
0.001
|
-3.51;-1.50
|
|
Coding
|
8.7 (2.7)
|
10.3 (3.4)
|
0.01
|
-2.69;-0.43
|
|
Test of Visual Motor Integration
VMI
|
93.3 (12.2)
|
109.6 (14.2)
|
0.001
|
-21.13;-11.48
|
| |
|
|
|
|
Table III
School performance of Extremely Preterm (EPT) and Fullterm (FT)
children
| |
EPT
n= 52
|
FT
n= 60
|
p
|
| |
|
|
|
|
Far below grade level
|
8%
|
0
|
|
|
Somewhat below grade level
|
30%
|
12%
|
|
|
|
|
|
0.001
|
|
At grade level
|
43%
|
49%
|
|
|
Somewhat above grade level
|
14%
|
25%
|
|
|
Far above grade level
|
5%
|
14%
|
|
Table IV
Results of Child Behavior Checklist for Extremely Preterm (EPT)
and Fullterm (FT) children
| |
EPT
n=52
Mean (SD)
|
FT
n=61
Mean (SD)
|
p
|
95% CI
|
|
|
CBCL
|
|
|
|
|
|
|
Total problem score
|
26.1 (18.2)
|
15.5 (13.6)
|
0.01
|
4.73;16.62
|
|
|
Internalisation
|
7.5 (5.8)
|
3.8 (4.2)
|
0.001
|
1.85;5.61
|
|
|
Externalisation
|
8.5 (6.9)
|
6.0 (6.5)
|
0.05
|
0.00; 4.93
|
|
|
Social competence
|
2.9 (2.6)
|
0.7 (1.4)
|
0.001
|
1.03;2.57
|
|
|
Attention
|
4.0 (3.6)
|
1.6 (2.0)
|
0.001
|
1.38;3.56
|
|
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