DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY ORIGINAL ARTICLE

Educational outcomes for children with cerebral palsy: a linked

data cohort study
MALCOLM B GILLIES 1,2,3 | JENNIFER R BOWEN 3,4 | JILLIAN A PATTERSON 2,3 | CHRISTINE L ROBERTS 2,3 |
SIRANDA TORVALDSEN 2,3,5

1 Centre for Epidemiology and Evidence, NSW Ministry of Health, North Sydney, NSW; 2 Clinical and Population Perinatal Health Research, Kolling Institute of
Medical Research, Sydney, NSW; 3 Northern Clinical School, University of Sydney, Sydney, NSW; 4 Royal North Shore Hospital, Northern Sydney Local Health
District, St Leonards, NSW; 5 School of Public Health and Community Medicine, UNSW, Sydney, NSW, Australia.
Correspondence to Siranda Torvaldsen at Clinical and Population Perinatal Health Research, Royal North Shore Hospital, Level 5 Douglas Building, St Leonards, NSW 2065, Australia.
Email: siranda.torvaldsen@sydney.edu.au

PUBLICATION DATA AIM To identify a cohort of children with cerebral palsy (CP) from hospital data; determine
Accepted for publication 9th November the proportion that participated in standardized educational testing and attained a score
2017. within the normal range; and describe the relationship between test results and motor
Published online symptoms.
METHOD This population-based retrospective cohort study used data from New South Wales,
ABBREVIATIONS Australia. We linked hospital data for children younger than 16 years of age admitted
ICD-10- International Classification of between 1st July 2000 and 31st March 2014 to education data from 2009 to 2014. Hospital
AM Diseases, Australian diagnosis codes were used to identify a cohort of children with CP (n=3944) and describe
Modification their motor symptoms. Educational outcomes in the CP cohort were compared with those
NAPLAN National Assessment Program among children without CP.
– Literacy and Numeracy RESULTS Of those with educational data (n=1770), 46% were exempt from reading
NSW New South Wales assessment because of intellectual or functional disability, 7% were absent or withdrawn
from testing and 47% participated in testing. About 30% of all children with educational data
had test scores in the normal range. The proportion was greatest among those with
hemiplegia (>40%) and lowest among those with tetraplegia (<10%).
INTERPRETATION One-third of children with CP participated in standardized testing and
achieved a result in the normal range. The proportions were lower in children with more
severe motor symptoms.

Many children with cerebral palsy (CP) have disabilities
that can limit participation in schooling.1 In Australia, as
with other high income countries, there has been an
emphasis for several decades on integrating children with
disability into mainstream schools with support such as
teachers’ aides and assistive technology.2 In a European
survey, the proportion of children with CP attending a
mainstream school was reported to vary between countries
from 20% to 93% in 2004 to 2005.3 The policy of main-
stream schooling for children with CP can be hard to eval-
uate, as there is a lack of CP-specific population-level data
describing participation and outcomes of schooling
through to high school level. Furthermore, studies must
accommodate the wide spectrum of disability in CP and
the corresponding variation in developmental and educa-
tional trajectories.
Since 2008 in Australia, the National Assessment Pro-
gram – Literacy and Numeracy (NAPLAN) standardized
educational achievement tests (similar to the National
Assessment of Educational Progress in the United States)
are administered in May of each year to students in Years 3,
5, 7, and 9. All children who are enrolled in school at the
time of the assessment have a result recorded, regardless of
whether they sit the test. This provides an opportunity to
link clinical data with education outcome data for children
who attend school at the time of NAPLAN testing.
This study aimed to identify a cohort of children with
CP from hospital records and, using linked educational
data, determine the proportion of children who partici-
pated in standardized educational testing and attained a
test score in the normal range (> 1SD from the mean). A
further aim was to describe the relationship between test
results and motor symptoms.
We hypothesized that, compared with children who
were not identified as having CP, the proportions of the
identified CP cohort who would participate in NAPLAN
testing and achieve a test score in the normal range would
be lower. We also hypothesized that these proportions
would be even lower among children with CP with more
severe motor symptom topography, as limitations in gross
motor function are associated with learning disability and
restricted participation in education.1,4

© 2017 Mac Keith Press DOI: 10.1111/dmcn.13651 1

METHOD
This was a population-based retrospective cohort study
using linked data from New South Wales (NSW), Aus-
tralia. NSW is the most populous state in Australia with
7.6 million residents and 96 000 births in 2015.5,6
Data sources and study population
Data on hospital in-patient stays were drawn from the
Admitted Patient Data Collection (‘hospital data’) for dis-
charge dates from 1st July 2000 to 31st March 2014. The
data cover all admissions to NSW public and private hos-
pitals and day procedure centres, with diagnoses coded
according to the International Classification of Diseases,
Australian Modification (ICD-10-AM). Children with a
date of birth from 1st January 1994 to 31st March 2014
and who were aged under 16 years at the time of admis-
sion were eligible for analysis. Fact of death records for
everyone who died in NSW during the period 1st January
1994 to 31st March 2014 came from the NSW Register of
Births, Deaths and Marriages (‘mortality data’). NAPLAN
results (‘education data’) were available for children who
attended NSW government schools in school years 2009
to 2014.7 In NSW, government schools account for
approximately 70% of primary (elementary) school stu-
dents.8 Tests are administered in grades 3, 5, 7, and 9 and
results are reported as a score out of 100, standardized to
be comparable across states, school grades, and years.7
There are five tests in total: numeracy, reading, writing,
and language conventions (one testing spelling and the
other testing grammar and punctuation). We used only
reading and numeracy results, as these were most stable
over time.9 Children who were enrolled in school at the
time of NAPLAN but did not sit the test have the reason
for not sitting the test recorded. Children who did sit the
test are categorized into one of six achievement bands
based on their equated scores and nationally defined cut-
points for each grade.
A child was identified as having CP if they had one or
more hospital record with an ICD-10-AM code G80–G83
(CP and other paralytic syndromes) in any field.10–12 We
omitted diagnoses that were coded as the sequela of spinal
cord injury, and excluded children whose first CP admis-
sion included a spinal cord injury code and no brain injury
codes. We made further exclusions consistent with Aus-
tralian CP registry rules, for example children who had
any diagnosis code for designated progressive neurological
conditions, congenital syndromes, or chromosomal abnor-
malities (Table SI and Appendix S1, online supporting
information).13,14
The NSW Centre for Health Record Linkage created
the linkage keys using probabilistic methods based on iden-
tifiers received directly from the data custodians. Following
the principle of data separation, custodians combined the
keys with the clinical data to provide deidentified data sets
to the researchers for analysis. Linkage keys allowed all
records for an individual to be joined within and between
data sets. The false linkage rate for this process is
2 Developmental Medicine & Child Neurology 2017
What this paper adds
• From 2009 to 2014, most Australian children with cerebral palsy (CP)
attended a mainstream school.
• The rate of disability-related exemption from standardized educational test-
ing was almost 50%.
• Thirty per cent of children with CP achieved educational scores in the nor-
mal range.
estimated at 3 per 1000 linkage identifiers.15 This study
was approved by the New South Wales Population and
Health Services Research Ethics Committee.
Outcomes and descriptive variables
The hospital data provided sex, year of birth, and in-
patient diagnoses, and age and Australian state of residence
at admission. We used age of death from mortality data
and records of hospital in-patient death to determine
which children survived to an age of 9 years and therefore
should be included in the denominator for calculating the
rate of linkage to education data.
We assigned each child’s motor symptom topography
according to any specific ICD-10-AM codes found on any
hospital admission record. When the code(s) were ambigu-
ous, we characterized the child’s symptom topography as
unspecified.
Chronic eye or ear conditions were determined using
ICD-10-AM diagnosis codes as described by Hardelid
et al.10 We assigned a diagnosis of epilepsy based on codes
G40 and G41, ignoring codes for convulsions (R56) as rec-
ommended for improved specificity.16 Finally, we assigned
indicators of several chronic conditions based on the pres-
ence of individual diagnostic codes: feeding difficulties
(R63.3), gastrostomy (Z43.1 or Z93.1), and dependence on
a wheelchair (Z99.3).
Each child who had reached the minimum age for
grade 3 by the end of the study could have up to four
linked educational assessment records (for grades 3, 5, 7,
and 9). The status of each assessment was either: absent;
withdrawn on parental request; exempt because of signifi-
cant intellectual or functional disability that severely lim-
its the child from participating in the test; or, result
available. For ease of interpretation, we dichotomized the
reading and numeracy outcomes for each linked record as
(1) in the normal range, defined as the child sat the test
and had a result greater than minus one standard devia-
tion (> –1SD) from the mean or (2) absent, withdrawn,
exempt, or result available and less than or equal to
minus one stand deviation (≤ 1SD) from the mean. This
also reflects the official reporting practice which deems
that students who are exempt from NAPLAN are below
the national minimum standard. For analyses based on a
single result per child, we used the earliest linked result
(i.e. grade 3 if available, otherwise grade 5 etc.). The
record also contained variables describing if the child
received special assistance to access the test such as a sup-
port person, large print/braille test material, rest breaks,
or assistive technology (described as ‘adjustments for
students with disability’).17
 Education data also included a unique identifier for each
school, and the school-level index of community socio-
educational advantage (ICSEA). From 2010, schools with
data on five or fewer students, juvenile justice schools, and
special schools for students with disability were not
assigned an ICSEA value. As the third of these reasons is
the most common for students with CP, lack of an ICSEA
score is a reasonable surrogate for special school status.18
Statistical methods and software
We described the cohort by counts and proportions. As
age and time distributions were skewed, we described these
by the median with 25th and 75th centiles (labelled as
interquartile range). Educational assessment results were
analysed as proportions with 95% confidence intervals,
with errors adjusted for clustering within schools using the
SAS SURVEYFREQ procedure. All analyses were done
using SAS version 9.4 (SAS Institute, Cary, NC, USA).
RESULTS
We identified a cohort of 3944 children with CP (Table I and
Fig. S1, online supporting information). Diagnosis codes
allowed a motor symptom topography to be assigned for about
60% of the CP cohort, with hemiplegia most common. Fifty-
eight per cent of children with CP were male. Median age at
first diagnosis was 3 years 10 months (interquartile range
1 year 11 months–6 years 8 months) and median hospital-
record follow-up time was 10 years 11 months (interquartile
range 7 years 8 months–13 years 0 months). Follow-up varied
by birth year, with hospital data for children born in the year
2000 (i.e. the earliest year for which hospital records could be
linked) most complete. As a consequence, the number of cases
identified was highest for a birth year of 1998, and declined
steeply from 2002 onwards (Fig. S2, online supporting infor-
mation). By the end of follow-up, the proportion of the cohort
who had died was 6%. As shown in Table II, epilepsy was the
most common of the chronic conditions considered (31%) and
wheelchair dependence the least common (9%).
One or more linked educational assessment records were
available for 45% of the cohort (n=1770); one or more
Table I: Characteristics of children with cerebral palsy identified from
hospital data
Measure n (%)
Total 3944 (100.00)
Motor symptom topography (%)
Unspecified 1543
Ataxia 38
Diplegia 445
Dyskinesia 173
Hemiplegia 1228
Tetraplegia 517
Male (%) 2288
Median age (IQR) at first hospital 3:10
diagnosis y:m
Median follow-up time (IQR) y:m 10:11 (7:8–13:0)
Died before 1st April 2014 (%) 253 (6.4)
IQR, interquartile range.
education records in years 2009 to 2014 were also available for
754 091 children without CP. Of those in the CP cohort who
were born in 2000 to 2004, alive at age 9 and resident in NSW
at the time of their first hospital diagnosis of CP (and who
therefore could actually sit the grade 3 test), 70% had one or
more linked educational assessment. Of those in the overall
CP cohort who had a linked education record in years 2010 to
2014, 33% attended a special school (compared with 1%
among children without CP) and 67% attended a mainstream
school. Of those in the overall CP cohort who had a linked
record in years 2009 to 2014, 4% were reported as absent, 3%
as withdrawn, and 46% exempt for the reading task, compared
with 3%, 1%, and 2% among the corresponding children
without CP (proportions were similar for the numeracy task).
Reading task exemption rates ranged from 20% for children
with isolated hemiplegia to 85% for children with tetraplegia.
Of those sitting the reading task, 18% had one or more form
of special assistance, compared with 1% among children with-
out CP (again, with similar proportions for the numeracy task).
All children with a linked education record and not reported as
absent, withdrawn, or exempt had a test score. Table III shows
the proportion of children in the CP cohort who had test
scores in the normal range. The proportion (about 30%) was
not appreciably different at different grade levels (3–9) or
between reading and numeracy tasks. The proportion of chil-
dren who had a test score greater than one standard deviation
above the mean was 6%. Note that children who were absent,
withdrawn, or exempt were retained in the denominator.
The proportion of children who had test scores in the
normal range for their earliest linked educational assess-
ment was greatest among those with hemiplegia (>40%),
and lowest among those with tetraplegia (<10%)
(Table IV). Proportions were similar for reading and
numeracy tasks.
DISCUSSION
Of children with CP who had linked education data, one-
third participated in standardized reading and numeracy
tests and achieved a result in the normal range, despite
CP-related disability. As expected, children with more sev-
ere motor symptoms were less likely to sit the tests and
achieve a result in the normal range.
About two-thirds of the children attended a mainstream
school, even though test exemption rates suggest that half
had a disability which precluded participation in testing.
Table II: Prevalence of chronic conditions among children with cerebral
(39.1) palsya
(1.6)
(18.5) Chronic condition n (%)
(7.2)
(51.1) Total 3944 (100.0)
(21.5) Epilepsy 1229 (31.2)
(58.0) Gastrostomy 561 (14.2)
(1:11–6:8) Chronic ear conditions 464 (11.8)
Feeding difficulties 431 (10.9)
Chronic eye conditions 425 (10.8)
Dependence on wheelchair 336 (8.5)
a
Children could have more than one chronic condition.
Educational Outcomes in Children with CP Malcolm B Gillies et al. 3
Table III: Educational assessment results by school grade for children
The strengths of this study include the availability of
with cerebral palsy. Each child could contribute results for multiple
linked data describing chronic conditions and educational
school grades
tests from birth through to the age of about 15 years for a
sizeable cohort, despite the relatively low prevalence of CP.
Result in normal range Educational data were available for 70% of eligible primary-
Reading Numeracy school age children with CP, which is the same proportion
of children that attend government schools among the over-
School grade (n) n (%) 95% CI n (%) 95% CI
all primary-school age population (educational data were
3 (766) 232 (30.3) 26.3–34.6 224 (29.2) 25.3–33.5 not available from non-government schools).
5 (874) 274 (31.4) 27.6–35.4 264 (30.2) 26.5–34.2 Limitations of this study include the potential for
7 (872) 258 (29.6) 25.5–34.0 215 (24.7) 20.9–28.8
9 (835) 218 (26.1) 22.3–30.4 200 (24.0) 20.3–28.0 incomplete or incorrect ascertainment of CP and incom-
plete or incorrect classification of motor symptom topogra-
CI, confidence interval.
phy and chronic conditions. Based on results from other
studies with comparable follow-up time, we expect the
overall ascertainment rate of CP to be about 80%.21,23 As
Table IV: Educational assessment results (earliest linked record) by mot-
children with mild CP are less likely to require hospital
or symptom topography for children with cerebral palsy
admission or to have a CP diagnosis recorded on their
Result in normal range hospital admission summary, our cohort may be biased
towards more severe cases, and this bias is likely to be
Reading Numeracy
Motor symptom worse for birth cohorts from 2002 onwards where follow-
topography (n) n (%) 95% CI n (%) 95% CI up is shorter and ascertainment rates are noticeably
Ataxia or dyskinesia 11 (10.5) 5.8–18.1 10 (9.5) 5.2–16.9 reduced. For the present study, the consequence would be
(105) a slight overestimate of chronic condition prevalence and a
Diplegia (242) 93 (38.4) 32.0–45.3 76 (31.4) 25.6–37.8 slight underestimate of the proportion achieving test
Hemiplegia (533) 229 (43.0) 38.5–47.5 226 (42.4) 37.9–47.0
Tetraplegia (253) 21 (8.3) 5.2–12.9 16 (6.3) 3.8–10.3 results in the normal range. Guidelines for CP diagnosis
Unspecified (637) 159 (25.0) 21.2–29.1 149 (23.4) 19.8–27.4 and coding did not change over the period of follow-up.
Total (1770) 513 (29.0) 25.7–32.5 477 (26.9) 23.9–30.3 The proportion of the cohort misclassified as having CP
CI, confidence interval. is possibly 10% to 20% and is likely to consist of individu-
als with CP-like symptoms. The validation study by Hol-
Only one in five children with CP who took part in the lung et al.22 found that a hospital in-patient diagnosis of
tests received special assistance but there were no data to CP had a positive predictive value of 86%. Those misclas-
indicate if all children had access to a test support person sified as having CP most commonly had epilepsy, develop-
or assistive technology when required. High rates of mental disorders of motor function, unspecified intellectual
exemption also prompt the question of whether parent and disability, other brain disorders, or motor dysfunction with
educator choice to exempt a child is an unbiased reflection postneonatal causes.22 In the present study, false positives
of actual inability to carry out the test. were unlikely to bias outcomes greatly.
The proportion of children who attended a mainstream Comparing the distribution of motor topographies in
school was similar to that reported in a survey of a sample our results to interstate register data suggests some degree
of 11- to 12-year-olds with CP conducted in the Australian of misclassification as, along with a large proportion who
state of Victoria. In the Victorian survey, 30% attended an could not be classified, we found a lower proportion of
ungraded/special developmental school class rather than children with diplegia (19% vs 31%), and a higher propor-
following the mainstream curriculum.19 tion with hemiplegia (51% vs 34%).20 Hollung et al.22
As the NSW CP register is voluntary and does not currently found that agreement between International Statistical
meet the national minimum ascertainment requirement,20 we Classification of Diseases and reviewer-assigned motor
opted to identify a cohort of children with CP from hospital symptom topography classification was acceptable with a
in-patient data alone. Hjern and Thorngren-Jerneck demon- kappa (j) statistic of 0.75.
strated that this approach is feasible using Swedish hospital Our linked data set does not contain any educational data
data and, more recently, Hollung et al. found acceptable com- beyond the NAPLAN test participation status and results, so
pleteness and correctness for a similar cohort in Norway by we are unable to describe other aspects of the educational
validating against a comprehensive population-based regis- experience of the children who were reported as exempt.
ter.21,22 Among our cohort, we found rates of epilepsy consis- We believe our education findings are generalizable to
tent with those observed in other Australian data.4 Other other Australian states, as CP cohorts should be broadly
chronic conditions may have been under recorded in hospital similar across the country, and standardized tests are
records, for example the rate of recorded wheelchair depen- administered consistently. While education is a state
dence (9%) was low compared with the proportion in inter- responsibility, all states follow a policy of mainstream
state registers who were categorized as Gross Motor Function schooling for children with disability.2 The broader results
Classification System level V (16%).4 are likely to be valid internationally: about 50% of children

4 Developmental Medicine & Child Neurology 2017

with CP had disabilities severe enough to prompt exemp-
tion from standardized testing, while about one-third were
able to complete reading and numeracy tests and perform
in the normal range.
Using a record linkage approach, these results show the
variation in educational participation and achievement
among children with CP. Increasing availability of educa-
tion data for linkage, including school readiness assess-
ments such as the Australian Early Development Census,
will allow future detailed longitudinal study of education
among children with CP, such as investigating changing
participation and test performance over the course of
schooling in relation to clinical determinants.
A CK N O W L E D G E M E N T S
This study uses unit record data from the Admitted Patient Data
Collection and the National Assessment Program – Literacy and
Numeracy. We thank the New South Wales Ministry of Health
(hospital data) and the NSW Department of Education and Com-
munities (education data) for providing population data, and the
NSW Centre for Health Record Linkage for record linkage. The
findings and views reported in this article are those of the authors
and should not be attributed to the departments that provided
data. This work was supported by the Australian National Health
and Medical Research Council (#APP1001066). CLR was funded
by an NHMRC Senior Research Fellowship (#APP1021025).
MBG and ST were funded through a New South Wales Ministry
of Health ‘Population Health and Health Services Research Sup-
port Program’ grant. The funding agencies listed had no involve-
ment in the study design; in the collection, analysis, and
interpretation of data; in the writing of the report; and in the
decision to submit the article for publication. This work was com-
pleted while MBG was employed as a trainee on the Biostatistics
Training Program funded by the NSW Ministry of Health. He
undertook this work while placed at the Kolling Institute. The
authors have stated that they had no interests that might be
perceived as posing a conflict or bias.
SUPPORTING INFORMATION
The following additional material may be found online:
Table SI: Progressive neurological conditions, congenital syn-
dromes and chromosomal abnormalities excluded from the CP
case definition
Appendix S1: Case exclusion criteria.
Figure S1: Flow of participants.
Figure S2: Children with cerebral palsy by year of birth.

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Educational Outcomes in Children with CP Malcolm B Gillies et al. 5

 DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY ORIGINAL ARTICLE

RESUMEN
RESULTADOS ACAD
EMICOS DE NINOS
~

CON PARALISIS CEREBRAL: UN ESTUDIO DE COHORTE DE DATOS VINCULADOS

OBJETIVOS Identificar una cohorte de nin~ os con para
lisis cerebral (PC) entre los datos hospitalarios, determinar la proporcio
n que
participan en evaluaciones acade
micas estandarizadas; alcanzan un puntaje dentro del rango normal y describir la relacio
n entre
los resultados de las evaluaciones y los s
ıntomas motores.
METODOS este estudio poblacional de cohorte retrospectivo usa datos de New South Wales, Australia. Vinculamos los datos
hospitalarios de nin~ os menores a 16 an ~ os de edad, ingresados entre el 1 de Julio del 2000 y el 31 de Marzo del 2014 con los datos
acade
micos del 2009 al 2014. Se utilizaron los co
digos diagno
sticos del hospital para identificar la cohorte de nin ~ os con PC (n=
3.944) y describir sus s
ıntomas motores. Los resultados acade
micos en la cohorte de PC se comparo
con aquellos nin ~ os sin PC.
RESULTADOS El 46% de aquellos con informacio
n acade
mica (n=1.770), fueron eximidos de la evaluacio
n de la lectura por
discapacidad intelectual o funcional, el 7% estuvieron ausentes o se retiraron de las evaluaciones y el 47% participaron de las
evaluaciones. Aproximadamente el 30% de los nin ~ os con datos acade
micos obtuvieron puntajes de prueba en el rango normal. La
proporcio
n fue mayor dentro de aquellos con hemiplejia (> 40%), y ma
s bajo dentro de aquellos con tetraplejia (< 10%).
INTERPRETACION un tercio de los nin~ os con PC participaron en evaluaciones estandarizadas y alcanzaron resultados dentro del
rango normal. La proporcio
n fue ma
s baja en nin
~ os con s
ıntomas motores severos.

RESUMO
ß AS COM PARALISIA CEREBRAL: UM ESTUDO DE COORTE COM DADOS RELACIONADOS
RESULTADOS EDUCACIONAIS PARA CRIANC

OBJETIVO Identificar uma coorte de criancßas com paralisia cerebral (PC) a partir de dados de hospitais, determinar a proporcßa~o
que participava de testes educacionais padronizados e obtiveram escores dentro da amplitude normal, e descrever a relacßa ~ o entre
os resultados dos testes e sintomas motores.
M
ETODO Este estudo retrospectivo de coorte populacional utilizou dados de New South Wales, Australia. No
s relacionamos dados
hospitalares de criancßas com menos de 16 anos admitidas entre 1 de julho de 2000 e 31 de marcßo de 2014 a dados educacionais
de 2009 a 2014. Os co
digos diagno

sticos hospitalares foram utilizados para identificar uma coorte de criancßas com PC (n=3944) e
descrever seus sintomas motores. Os resultados educacionais na coorte com PC foram comparados com criancßas sem PC.
RESULTADOS Daqueles com dados educacionais (n=1770), 46% estavam isentos de realizar avaliacßa~o da leitura por causa de
^ncia intelectual ou funcional, 7% se ausentaram ou se retiraram do teste e 47% participaram do teste. Cerca de 30% de
deficie
todas as criancßas com dados educacionais tiveram escores do teste dentro da amplitude normal. A proporcßa ~o foi maior entre
aqueles com hemiplegia (>40%), e menor entre aqueles com tetraplegia (<10%).
INTERPRETAC ~ Um tercßo das criancßas com PC participaram de avaliacßa~o padronizada e atingiram um resultado dentro do
ß AO
normal. As proporcßo ~ es foram menores nas criancßas com sintomas motores mais severos.