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Corresponding author at: Australian Institute of Health Innovation, Macquarie University, Level 6, 75 Talavera Road, Macquarie University NSW 2109, Australia
Jamieson Trauma Institute, Royal Brisbane & Women's Hospital, Metro North Health, Brisbane, Australia.Queensland University of Technology (QUT), Centre for Healthcare Transformation, Australian Centre for Health Services Innovation (AusHSI), Brisbane, Australia.
Young people hospitalised with epilepsy have >3 times higher risk of not achieving the national minimum standard for numeracy and reading, compared to matched peers from the general population not hospitalised with epilepsy.
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Young people hospitalised with epilepsy have 78% higher risk of not completing year 10, compared to matched peers from the general population not hospitalised with epilepsy.
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Academic performance is worse for young females with epilepsy than young males with epilepsy, compared to their matched peers from the general population not hospitalised with epilepsy.
Abstract
Objectives: To compare academic performance and high school completion of young people admitted to hospital with epilepsy and matched peers from the general population not admitted to hospital with epilepsy during the study period.
Methods: A population-based matched case-comparison cohort study of young people aged ≤18 years hospitalised with epilepsy during 2005-2018 in New South Wales, Australia, using linked birth, health, education, and mortality records. The comparison cohort was matched on age, sex, and residential postcode. Generalised linear mixed modelling examined risk of school performance below the national minimum standard (NMS), and generalised linear regression examined risk of not completing high school for young people hospitalised with epilepsy compared to matched peers not hospitalised with epilepsy during the study period. Adjusted relative risks (ARRs) with 95% confidence intervals (CIs) were derived from the final models.
Results: Young people hospitalised with epilepsy had more than 3 times higher risk of not achieving the NMS for numeracy (ARR: 3.40; 95%CI 2.76‒4.18) and reading (ARR: 3.15; 95%CI 2.60‒3.82), compared to matched peers. Young people hospitalised with epilepsy had a 78% higher risk of not completing year 10 (ARR: 1.78; 95%CI 1.14‒2.79), 18% higher risk of not completing year 11 (ARR: 1.18; 95%CI 0.97‒1.45), and 38% higher risk of not completing year 12 (ARR: 1.38; 95%CI 1.14‒1.67), compared to matched counterparts.
Conclusion: Young people hospitalised with epilepsy have higher risk of not achieving minimum standards for numeracy and reading and not completing high school compared to matched peers. There is a need for effective strategies and interventions (e.g., early seizure control and improved multidisciplinary management and care coordination) to minimise the potential adverse effect of epilepsy on education and its sequelae such as early school leaving, unemployment and poverty in adulthood.
Epilepsy is a neurological disorder characterised by spontaneous and recurrent seizures. Although epilepsy has a wide range of aetiologies, the cause of seizures often remains unidentified [
]. Epilepsy is a leading cause of disability in young people, and the global prevalence among young people aged ≤19 years is estimated to be almost 1% (i.e., approximately 23 million young people worldwide) [
Assessment of health related quality of life in children with epilepsy using quality of life in childhood epilepsy questionnaire (QOLCE-55) in tertiary care hospital.
]. Childhood epilepsy may impact on academic performance though both seizure-related and non-seizure related effects. Seizures can result in unplanned medical visits, which not only lead to significant healthcare service utilisation, but also school absenteeism [
The effect of seizure on school attendance among children with epilepsy: a follow-up study at the pediatrics neurology clinic, Tikur Anbessa specialized hospital, Addis Ababa, Ethiopia.
The effect of seizure on school attendance among children with epilepsy: a follow-up study at the pediatrics neurology clinic, Tikur Anbessa specialized hospital, Addis Ababa, Ethiopia.
Educational and health outcomes of children and adolescents receiving antiepileptic medication: Scotland-wide record linkage study of 766 244 schoolchildren.
]. In regard to non-seizure-related effects, up to 50% of young people with epilepsy have cognitive impairments such as difficulties with attention, concentration, and memory [
]. However, they also highlight several limitations of the existing body of research. For instance, the majority of studies have been conducted in the United States (65%), at a single site (75%), using a cross-sectional study design (80%), and relatively modest samples sizes (i.e., N<200) [
], and none have been conducted in an Australian population.
There is a need for large, population-based cohort studies on academic performance in young people with epilepsy in Australia. In particular, studies considering a range of young age groups using objective measures of academic performance (e.g., national standardised school assessments and school completion), that include a matched comparison group, and are able to adjust for potential moderating factors (e.g., parental education, socioeconomic status, school absenteeism, and comorbid health conditions) are required. This will improve cross-country generalisability of findings demonstrating poorer academic achievement among young people with epilepsy, and inform health and social policies impacting on young people with epilepsy in Australia. Hence, this study aims to compare academic performance and high school completion of young people admitted to hospital with epilepsy and matched peers not admitted to hospital with epilepsy in Australia.
2. Methods
2.1 Study design
This is a retrospective, population-level, matched case-comparison cohort study of young people hospitalised with epilepsy aged ≤18 years in New South Wales (NSW), Australia, and matched peers from the general population not hospitalised with epilepsy, using linked birth, health, education and mortality data collections from 1 January 2005 to 31 December 2018. Ethical approval and a waiver of consent was obtained from the NSW Population and Health Services Research Ethics Committee (reference number 2018HRE0904), and a research protocol has been published previously [
Impact of chronic health conditions and injury on school performance and health outcomes in New South Wales, Australia: a retrospective record linkage study protocol.
Information on health service use was obtained from emergency department (ED) and hospital admission data collections. ED visits to public hospitals included data on arrival and departure times, visit type, and provisional diagnosis. Hospital admissions were to public or private hospitals, and contained information on demographics, diagnoses, separation type (e.g., hospital transfer, death), and clinical procedures. Mortality data was obtained from the NSW Registry of Births, Deaths and Marriages and young people who died during the study period were excluded from analyses.
School performance and parental demographic information were obtained from National Assessment Plan for Literacy and Numeracy (NAPLAN) assessments conducted annually in May from 2008 to 2018 for government, Catholic, and independent schools. Assessments were conducted in primary school grades 3 (i.e., 7-9 years of age) and 5 (i.e., 9-11 years of age), and secondary school grades 7 (i.e., 11-13 years of age) and 9 (i.e., 13-15 years of age). NAPLAN assessments included assessments in numeracy and reading, and each score is converted into proficiency bands that indicate whether performance was above, at, or below the national minimum standard (NMS). Inability to achieve the NMS indicates that a young person will have difficulty making progress in school without assistance [
A young person's attendance, absence, withdrawal (e.g., philosophical objections to testing or religious beliefs) or exemption due to significant disability for the assessments was obtained (Table A.1). Young people exempt from sitting an assessment due to severe disability or language difficulties were rated as scoring below the NMS as per technical guidelines [
Australian Curriculum Assessment and Reporting Authority (ACARA) National assessment program - literacy and numeracy achievement in reading, persuasive writing, language conventions and numeracy: national Report for 2014.
A young person was classified as having a language background other than English (LBOTE) if either they or their parents or guardians spoke a language other than English at home [
]. Where there were multiple records of the parents’ level of education and occupation, the highest level of education (i.e., ≤Year 12; certificate I-IV, trade or diploma; bachelor or higher degree; and not stated or unknown) and occupation (i.e., senior manager/qualified professional; business manager/associate professional; trades/clerks/skilled office/sales or service; machine operators/hospitality/assistants/labourers; and not in paid work in last 12 months) of either parent was identified. For each young person, information on high school completion at years 10 (i.e., 15-16 years of age), 11 (i.e., 17-18 years of age) and 12 (i.e., 17-18 years of age) were obtained through the Record of School Achievement and the Higher School Certificate.
The Centre for Health Record Linkage (CHeReL) identified the population comparison group and linked the birth, health, education and mortality records using probabilistic record linkage. Upper and lower probability cut-offs for a link were 0.75 and 0.25 and record groups with probabilities between the cut-offs were clerically reviewed.
2.3 Case and comparison inclusion criteria
The case cohort comprised young people with a year of birth ≥1997 and aged ≤18 years when admitted to hospital with a principal or additional diagnosis of epilepsy (International Classification of Diseases, 10th Revision, Australian Modification [ICD-10-AM]: G40 and G41) during 1 January 2005 to 31 December 2018. Cases were included if the young person completed both the numerical and reading NAPLAN assessments in a school grade.
A population-based comparison cohort of young people from the general population who were not admitted to hospital with epilepsy during 1 July 2001 to 31 December 2018 was randomly selected from NSW birth records and matched 1:1 on age, sex, and residential postcode. The selection timeframe for comparisons included a 3.5-year wash-out period prior to the case selection timeframe to avoid the potential selection of comparisons who may have been hospitalised with epilepsy prior to the case criteria timeframe.
2.4 Geographical location and socioeconomic status
The Australian Statistical Geographical Standard [
] is based on distance to service centres and was used to classify the postcode of residence of the young person as either urban (i.e., major cities) or rural (i.e., inner and outer regional, remote, and very remote). The remoteness area of the school was obtained from NAPLAN records and was categorised as major city, inner regional, outer regional, or remote [
]. The young person's postcode of residence was mapped to the Index of Relative Socioeconomic Disadvantage and partitioned into quintiles from most (i.e., 1) to least (i.e., 5) disadvantaged [
Chronic conditions among children admitted to U.S. pediatric intensive care units: their prevalence and impact on risk for mortality and prolonged length of stay*.
]. For this study, a chronic health condition was identified using a three-year look-back period (i.e., to 1 January 2002) and diagnosis classifications from ICD-10-AM (Table A.2).
2.6 Data management and analysis
Data analysis was conducted using SAS 9.4 (SAS Institute, Cary NC). All hospital episodes of care related to the same event were linked to form a period of care. Chi-square tests of independence and Wilcoxon Mann-Whitney tests were used to examine characteristics of young people hospitalised with epilepsy and their matched counterpart. The number of ED visits and hospital admissions and cumulative hospital length of stay (LOS) before, during, and after the index admission was identified for cases and their matched comparison counterpart. The calculation of hospital LOS included transfers between hospitals.
Generalised linear regression was used to examine the difference in proportions of performance below the NMS for each NAPLAN assessment at each school grade (i.e., 3, 5, 7, and 9) for cases and their matched counterparts (Table A.3). Adjusted relative risks (ARR) were calculated with 95% confidence intervals (CIs). For each assessment, models were fitted using generalised estimating equations with binomial distribution and a log link function. Forward selection was used to sequentially add covariates to the model [
Impact of chronic health conditions and injury on school performance and health outcomes in New South Wales, Australia: a retrospective record linkage study protocol.
], and significance was assessed using p-values (p<0.05) to examine the overall effect in the model. The final models included epilepsy status, sex, comorbidity status, LBOTE status, socioeconomic status, and highest level of parental education. As comparison group members could have nil hospital LOS, a small constant value was added to LOS before transformation [
Generalised linear mixed modelling was conducted to perform multi-level modelling of school performance below the NMS for each NAPLAN assessment for cases and their matched counterparts who had completed multiple grades of schooling. For each domain, PROC GLIMMIX was used with a binary distribution, log link function, and Kenward and Roger denominator degrees of freedom. The residual option of the random statement was used to model R-side covariance and data were analysed to account for within student correlation in the longitudinal data and repeated measurements using an autoregressive covariance structure. ARRs were generated with 95% CIs. The final models included epilepsy status, sex, NAPLAN grade, comorbidity status, LBOTE status, socioeconomic status, and logarithm of hospital LOS.
Generalised linear regression was used to examine factors associated with high school completion at either year 10, 11 or 12 for cases and their matched counterparts. For each year, models were fitted using generalised estimating equations with binomial distribution and a log link function. ARRs were calculated 95%CIs. The final models included epilepsy status, sex, comorbidity status, LBOTE status, socioeconomic status, and highest level of parental education.
3. Results
There were 2,383 young people hospitalised with epilepsy where a matched counterpart could be identified and had completed the NAPLAN assessments in grade 3; 1,848 in grade 5; 1,325 in grade 7; and 780 in grade 9 during 2015-2018 (Fig. 1). There were 1,373 young people hospitalised with epilepsy with a matched counterpart who could have completed year 10; 1,186 year 11; and 943 year 12 of high school.
Across school grades 3 to 9, there were almost even proportions of young females (∼51%) and males (∼49%) hospitalised with epilepsy. About three-quarters of young people hospitalised with epilepsy were from urban locations and from English-speaking households. Young people hospitalised with epilepsy were significantly more likely to have one or more chronic health conditions compared to their matched counterparts (1 in 6 versus 1 in 14). Young people hospitalised with epilepsy had slightly lower proportions of parents with a university degree and slightly higher proportions of parents who were not in paid employment in the last 12 months compared to their matched counterparts at each school grade. Young people hospitalised with epilepsy had significantly higher mean number of ED visits, hospital admissions, and hospital LOS then their matched counterparts at each school grade. See Table 1 for more details.
Table 1Demographic and healthcare use characteristics of young people hospitalised with epilepsy and their matched comparison by grade, linked health and school performance data NSW, 2005-2018.
Excludes not known location of residence and socioeconomic status for 2 cases and comparisons in grade 3; 1 case and comparison in grade 5; and 1 case and comparison in grade 7.
Excludes not known location of residence and socioeconomic status for 2 cases and comparisons in grade 3; 1 case and comparison in grade 5; and 1 case and comparison in grade 7.
1 Grade 3 chi-square tests: LBOTE p=0.893; Health conditions p<0.0001; Parent highest level of education p<0.0001; Parent highest occupation p<0.0001; and Wilcoxon Mann-Whitney tests: ED visits p<0.0001; Hospital admissions p<0.0001; Hospital length of stay p<0.0001.
2 Grade 5 chi-square tests: LBOTE p=0.558; Health conditions p<0.0001; Parent highest level of education p=0.002; Parent highest occupation p<0.0001; and Wilcoxon Mann-Whitney tests: ED visits p<0.0001; Hospital admissions p<0.0001; Hospital length of stay p<0.0001.
3 Grade 7 chi-square tests: LBOTE p=0.317; Health conditions p<0.0001; Parent highest level of education p=0.047; Parent highest occupation p<0.0001; and Wilcoxon Mann-Whitney tests: ED visits p<0.0001; Hospital admissions p<0.0001; Hospital length of stay p<0.0001.
4 Grade 9 chi-square tests: LBOTE p=0.131; Health conditions p<0.0001; Parent highest level of education p=0.036; Parent highest occupation p=0.0005; and Wilcoxon Mann-Whitney tests: ED visits p<0.0001; Hospital admissions p<0.0001; Hospital length of stay p<0.0001.
5 Excludes not known location of residence and socioeconomic status for 2 cases and comparisons in grade 3; 1 case and comparison in grade 5; and 1 case and comparison in grade 7.
Between two-thirds and three-quarters of young people attended government schools in major cities, with slightly higher proportions for young people hospitalised with epilepsy compared to matched counterparts at each school grade. Young people hospitalised with epilepsy had significantly higher risk for not achieving the NMS for numeracy or reading, compared to their matched counterparts (25% versus 2%-5%) (Table 2).
Table 2School and NAPLAN assessment characteristics of young people hospitalised with epilepsy and their matched comparison by grade, linked health and school performance data NSW, 2005-2018.
After adjusting for covariates, young people hospitalised with epilepsy had more than 3 times higher risk of not achieving the NMS on NAPLAN assessments for numeracy (ARR: 3.40; 95%CI 2.76‒4.18) and reading (ARR: 3.15; 95%CI 2.60‒3.82) compared to matched counterparts. The adjusted relative risk for not achieving the NMS on NAPLAN assessments was slightly higher for young females than young males, compared to their matched counterparts (Table 3).
Table 3Multilevel model of epilepsy associated with a below NMS NAPLAN assessment for young people with epilepsy compared to their matched comparison, linked health and school performance data NSW, 2005-2018.
Adjusted for epilepsy status, sex, LBOTE status, socioeconomic status, comorbidity status, NAPLAN grade, and hospital LOS. Excludes 8 (0.1%) cases with missing socioeconomic status, 25 (0.2%) with missing LBOTE status, and 1 (0.01%) case who was home schooled.
Adjusted for epilepsy status, sex, comorbidity status, NAPLAN grade, and hospital LOS. Excludes 8 (0.1%) cases with missing socioeconomic status, 25 (0.2%) with missing LBOTE, and 1 (0.01%) case who was home schooled.
95%CI
All persons
6.00*
5.23–6.88
3.40*
2.76–4.18
4.70*
4.16–5.30
3.15*
2.60–3.82
Male
4.51*
3.80–5.36
3.06*
2.35–4.00
3.52*
3.03–4.09
2.84*
2.22–3.62
Female
8.84*
7.00–11.15
3.91*
2.79–5.52
7.30*
5.91–9.03
3.65*
2.62–5.08
*p<0.0001
1 Unadjusted relative risk.
2 Adjusted for epilepsy status, sex, LBOTE status, socioeconomic status, comorbidity status, NAPLAN grade, and hospital LOS. Excludes 8 (0.1%) cases with missing socioeconomic status, 25 (0.2%) with missing LBOTE status, and 1 (0.01%) case who was home schooled.
3 Adjusted for epilepsy status, sex, comorbidity status, NAPLAN grade, and hospital LOS. Excludes 8 (0.1%) cases with missing socioeconomic status, 25 (0.2%) with missing LBOTE, and 1 (0.01%) case who was home schooled.
Young males hospitalised with epilepsy had 2 times higher risk of not completing year 10 (ARR 2.01; 95%CI 1.06‒3.81), but not significantly higher risk of not completing year 11 (ARR 1.09; 95%CI 0.84‒1.40) or year 12 (ARR 1.19; 95%CI 0.91‒1.55), compared to matched counterparts. Young females hospitalised with epilepsy had about 40% to 70% higher risk of not completing year 10 (ARR 1.65; 95%CI 0.88‒3.09), year 11 (ARR: 1.41; 95%CI 1.02‒1.94), or year 12 (ARR: 1.66; 95%CI 1.26‒2.19), compared to matched counterparts (Table 4).
Table 4High school completion for young people with epilepsy compared and their matched comparison by grade, linked health and school performance data NSW, 2005-2018.
Year 10 relative risk adjusted for epilepsy status, sex, LBOTE, socioeconomic status (excluding 2 cases and comparisons with missing socioeconomic status), comorbidity status, and parental education.
Year 11 relative risk adjusted for epilepsy status, sex, LBOTE, socioeconomic status (excluding 2 cases and comparisons with missing socioeconomic status), comorbidity status, and parental education.
Year 12 relative risk adjusted for epilepsy status, sex, LBOTE, socioeconomic status (excluding 1 case and comparison with missing socioeconomic status), comorbidity status, and parental education.
95%CI
All persons
57
1.78*
1.14–2.79
213
1.18
0.97–1.45
250
1.38**
1.14–1.67
Male
26
2.01*
1.06–3.81
117
1.09
0.84–1.40
111
1.19
0.91–1.55
Female
31
1.65
0.88–3.09
96
1.41*
1.02–1.94
139
1.66**
1.26–2.19
*p<0.05; **p<0.001.
1 Percent calculated for young people in case and comparison cohorts not completing the school year.
2 Number of students hospitalised with epilepsy not completed the school year.
3 Year 10 relative risk adjusted for epilepsy status, sex, LBOTE, socioeconomic status (excluding 2 cases and comparisons with missing socioeconomic status), comorbidity status, and parental education.
4 Year 11 relative risk adjusted for epilepsy status, sex, LBOTE, socioeconomic status (excluding 2 cases and comparisons with missing socioeconomic status), comorbidity status, and parental education.
5 Year 12 relative risk adjusted for epilepsy status, sex, LBOTE, socioeconomic status (excluding 1 case and comparison with missing socioeconomic status), comorbidity status, and parental education.
This large population-based cohort study found that, compared to matched peers, young people hospitalised with epilepsy had a higher risk of not achieving minimum standards for numeracy and reading in national school-based assessments and not completing high school year 10. In addition, young females hospitalised with epilepsy also had a higher risk of not completing high school year 11 and year 12 compared to matched peers.
The findings of this study conform to previous literature reviews highlighting that young people with epilepsy experience poorer academic achievement [
]. However, the proportion of young people with epilepsy who experience academic underachievement varies depending on study population, domain of academic achievement, and criteria for underachievement. For instance, Piccinelli et al [
] found that among Italian children with rolandic epilepsy aged 7-12 years, 45% and 31% scored 2 standard deviations below the mean on standardised achievement test for reading and mathematics, respectively. Tedrus et al [
] reported that among Brazilian children with epilepsy aged 8-11 years, 52% and 36% had inferior performance in reading and arithmetic, respectively, where inferior performance was defined as scores in the lower quartile on national school achievement tests. However, the studies by Piccinelli et al [
Academic underachievement among children with epilepsy: proportion exceeding psychometric criteria for learning disability and associated risk factors.
] found that among 164 children with epilepsy aged 8-15 years, 20% and 27% scored 1.5 standard deviation below the mean on achievement tests for reading and mathematics, respectively. Similarly, the current large population-based study found that about 25% of Australian young people with epilepsy aged 7-15 years did not achieve minimum standards for numeracy and reading in national assessments.
There is conflicting evidence whether poorer academic performance among young people with epilepsy varies by sex, with some studies reporting no association [
]. However, the latter study noted that epilepsy severity was a likely confounder, with severity being higher among the young males than the young females. Moreover, these studies were based on relatively modest sample sizes (i.e., N<125), which potentially limits their generalisability. In contrast, this large population-based study identified higher risk of not achieving minimum standards for numeracy and reading in national assessments for young females than for young males, compared to their matched counterparts without epilepsy. Although epilepsy severity data were not available for this study, and thus could not be controlled for directly, the multivariable analyses did control for hospital LOS, which may be considered as a proxy measure for severity.
This study found that about 27% of young people with epilepsy did not complete high school. Previous studies have noted a similarly high prevalence of not completing high school among young people with neuro-disabilities such as epilepsy [
]. The prevalence of not completing high school appear to vary depending on the type of epilepsy, with individual estimates reported as 13% for juvenile myoclonic epilepsy [
Idiopathic generalized epilepsy with generalized tonic-clonic seizures (IGE-GTC): a population-based cohort with >20 year follow up for medical and social outcome.
Possible explanations for poorer academic achievement and high school completion for young people with epilepsy include both seizure-related and non-seizure related effects. Seizures can result in unplanned medical visits, which can lead to significant school absenteeism and lost learning opportunities [
The effect of seizure on school attendance among children with epilepsy: a follow-up study at the pediatrics neurology clinic, Tikur Anbessa specialized hospital, Addis Ababa, Ethiopia.
The effect of seizure on school attendance among children with epilepsy: a follow-up study at the pediatrics neurology clinic, Tikur Anbessa specialized hospital, Addis Ababa, Ethiopia.
]. Although data on school absences were not available in this study, previous research has demonstrated that school absenteeism partly explain poorer educational attainment in children on anti-epileptic medication [
Educational and health outcomes of children and adolescents receiving antiepileptic medication: Scotland-wide record linkage study of 766 244 schoolchildren.
]. In regard to non-seizure-related effects, up to 50% of people with epilepsy have cognitive impairments such as difficulties with attention, concentration, memory, executive function, response inhibition, language, auditory processing, and perception [
Educational and health outcomes of children and adolescents receiving antiepileptic medication: Scotland-wide record linkage study of 766 244 schoolchildren.
Because poorer educational outcomes for young people with epilepsy are mediated via both seizure-related and non-seizure-related effects, there is a need for comprehensive and coordinated multidisciplinary management for young people with epilepsy. This may include active care coordination between acute, primary, tertiary, and specialist care settings, as well as school- and home-based services. Although successful seizure control is key, seizure remission may not sufficiently enhance social outcomes [
]. In addition to early seizure control, it is vital to recognise and address learning difficulties, attentional issues, comorbid conditions, and medication side effects [
]. Furthermore, it is essential to minimise social stigma in school settings. Although young people with epilepsy are included in classroom activities to the same extent as their peers, they are less likely to be included in all playground activities due to staff decisions, the young person's own choice, peer-led exclusion, or a combination of the above [
]. Research suggests that school-based health education programs may play an important role in changing in attitudes, behaviours, and practices among school children [
Lastly, it is worth noting that the risk of not completing senior years of high school was higher for young females with epilepsy than for young males with epilepsy, compared to their matched peers. It is atypical to observe higher risk of high school leaving among young females in Australia [
]. The exact reasons for this observation are unclear, but may be related to elevated psychosocial pressures on young females during adolescence, or perhaps confounded by differences in severity of epilepsy or because young males with epilepsy who leave school tend to leave earlier than their young female counterparts. Future studies should consider exploring this in further details.
The strengths of this study were that it was a large population-based study linking health and educational records over a 13-year period, and that it was able to control for parental education, LBOTE and socioeconomic status. However, there were some limitations. This study only included young people who had been admitted to hospital with epilepsy, and thus did not include young people presenting solely to other healthcare care settings (e.g., outpatient and primary care). It is estimated that up to 20% of young people with epilepsy are not admitted to hospital, and that uncomplicated absence seizures predominate among the patients who are not admitted to hospital. Thus, there is likely to be some degree of epilepsy severity bias in the present study. Of the 9,806 potentially eligible cases identified in the hospitalisation data, 2,804 cases (28.6%) were excluded because no matched comparison was able to be identified. Unfortunately, it was not possible to compare matched and unmatched cases because the investigators only received information on cases with matched comparisons. There was no information on the severity of epilepsy symptoms, type or frequency of seizures, epilepsy management plans or medication, or potential moderating factors (e.g., sleep disturbance or school absences). Only comorbidities relevant to a hospitalisation are indicated in diagnosis classifications, and it is possible that some comorbid conditions were not identified. This is particularly likely for the comparison cohort, where about 60% had not been hospitalised, leaving no opportunity to identify comorbid conditions, despite the three-year look-back period. Residential postcode was missing for a small number of cases, which precluded assigning socioeconomic status for these cases. The recency of residential postcode may vary between datasets, which may affect the accuracy of socioeconomic status. Visits to private hospital EDs were not able to be accessed for this study; however, these represent only a small proportion of the total number of ED visits in Australia. A higher proportion of young people with epilepsy were absent for NAPLAN assessments compared to their matched counterparts and the current study was not able to take into account school clustering. No information was available regarding any tutoring or additional education services that a young person may have received.
5. Conclusion
Academic performance is worse in young people hospitalised with epilepsy compared to matched peers, including higher risk of not achieving minimum standards for numeracy and reading and not completing high school. In addition to early seizure control, improved multidisciplinary management and care coordination are vital to minimise the potential adverse effect of epilepsy on education and its sequelae such as early school leaving, unemployment and poverty in adulthood.
Author contributions
RM, CC, AM were all involved in study concept and design. RM acquired and organised the data. RPL conducted the analysis and wrote the first draft of the manuscript. TB-P provided statistical assistance for the GLMM analysis. All authors (RM, CC, GH, RPL, AM, and TB-P) were involved in interpretation of data and critical revision of the manuscript.
Ethical statement
Ethical approval was obtained from the NSW Population and Health Services Research Ethics Committee (2018HRE0904). A waiver of consent was granted by the ethics committee. The authors confirm that they have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.
Data availability statement
The data that support the findings of this study are available from the NSW Health Department, NSW Department of Education and NSW Education Standards Authority. Restrictions apply to the availability of these data, which were used under licence for the current study, so are not publicly available.
Funding
This study was funded by a philanthropic donor to Macquarie University.
Declaration of Competing Interest
The authors declare they have no conflict of interest.
Acknowledgements
The authors wish to thank the NSW Ministry of Health for providing access to the ED visit, hospitalisation, and mortality data, NSW Department of Education for providing access to school enrolment and completion information, the NSW Education Standards Authority for providing access to the NAPLAN data, and the Centre for Health Record Linkage for conducting the data linkage.
Assessment of health related quality of life in children with epilepsy using quality of life in childhood epilepsy questionnaire (QOLCE-55) in tertiary care hospital.
The effect of seizure on school attendance among children with epilepsy: a follow-up study at the pediatrics neurology clinic, Tikur Anbessa specialized hospital, Addis Ababa, Ethiopia.
Educational and health outcomes of children and adolescents receiving antiepileptic medication: Scotland-wide record linkage study of 766 244 schoolchildren.
Impact of chronic health conditions and injury on school performance and health outcomes in New South Wales, Australia: a retrospective record linkage study protocol.
Australian Curriculum Assessment and Reporting Authority (ACARA)
National assessment program - literacy and numeracy achievement in reading, persuasive writing, language conventions and numeracy: national Report for 2014.
Chronic conditions among children admitted to U.S. pediatric intensive care units: their prevalence and impact on risk for mortality and prolonged length of stay*.
Academic underachievement among children with epilepsy: proportion exceeding psychometric criteria for learning disability and associated risk factors.
Idiopathic generalized epilepsy with generalized tonic-clonic seizures (IGE-GTC): a population-based cohort with >20 year follow up for medical and social outcome.
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