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Why does this matter?

Congenital cytomegalovirus (cCMV) is a rare condition that can affect hearing, vision and neurodevelopment. Little is known about how children with cCMV progress through school.  

What did we want to find out?

We wanted to find out how children born with cCMV compared to those without, in terms of school attainment, attendance, and Special Educational Needs provision.

What we did

We used ECHILD to create a cohort of children born 2003-2008 who completed primary school before the COVID-19 pandemic. We found children with cCMV based on diagnosis codes recorded in hospital records. We followed children up through education records to assess attainment, attendance, and Special Educational Needs and Disability provision.

What we found

Our cohort included 223 children with a hospital record of cCMV before starting primary school. Almost 3 in 4 children with cCMV were recorded as having SEND provision during primary school compared to 1 in 3 children without cCMV. Fewer than half of children with cCMV met nationally expected levels in maths assessments and over a third were excluded from assessments at the end of primary school. Health-related and persistent school absences were consistently higher for cCMV children, with more than 1 in 5 persistently absent at the end of primary (vs. less than 1 in 10 of peers).

What this means, and what’s next

Children with cCMV have higher rates of SEND, lower attainment, and greater health-related and persistent absences throughout primary school compared with peers. Our findings highlight the support needs of this population.

Background/aims: 

An estimated 0.5% of children are born with congenital cytomegalovirus (cCMV) in England. Of these, 10-15% have symptoms at birth (and so may be diagnosed in the absence of screening), of whom half have long-term cCMV-related sequelae. Sequelae in those asymptomatic at birth include late-onset hearing loss in around 10-15%. Evidence is lacking on educational support needs and outcomes throughout primary school, however this is important for a more complete understanding of the impact of cCMV and for cost-effectiveness analyses of potential screening and vaccination approaches.

Methods and analysis:

Using ECHILD, we constructed a national cohort of singleton children born 2003-2008 (who therefore completed primary school before the COVID-19 pandemic). Children with cCMV were identified from hospital admission records before school entry using ICD-10 codes P35.1 and B25.9 (<28 days) and were followed to end of primary school (age 10–11). We assessed the proportion with recorded cCMV receiving special educational needs and disabilities (SEND) provision, described underlying reasons for support, and evaluated primary school attainment relative to their peers, stratified by gestational age and sex. We analysed patterns of health-related and persistent absences (missing ≥10% of school sessions) among children with recorded cCMV vs peers.

Results:

Our national cohort included 223 children with a hospital record of cCMV (52.9% female) before starting primary school. Over 75% of children with the P35.1 code were diagnosed in the first 3 months of birth. Children with cCMV were more likely to be from low-income families (eligible for free school meals) (32.7% vs 18.3% among peers), born at <37 gestation weeks (51.8% vs 6.2%), <2500g at birth (53.8% vs 5.8%) and have mothers aged <20 (17.4% vs 7.1%). Over 73% received SEND provision during primary school (vs 32.5% of peers), and 26.9% attended specialist SEND schools (vs 1.1%). The most common primary reasons for SEND were hearing impairment (22.0%), severe learning difficulties (13.5%), and profound/multiple learning difficulties (13.0%), with speech, language, and communication needs the most common secondary reason (27.3%). Fewer than half of children with cCMV met nationally expected levels in maths assessments and over a third were excluded from assessments at the end of primary school. At age 6–7, adjusted risk ratios for non-attainment in the cCMV cohort vs. peers were highest among females (RR = 2.64, 95% CI 2.24–3.12) and term-born children (RR = 2.31, 95% CI 1.83–2.92). Health-related and persistent school absences were consistently higher for cCMV children, with >20% persistently absent at the end of primary (vs. 7% of peers).

Conclusions:

Children with cCMV identified through early hospital admission records had higher rates of special educational needs, lower attainment, and greater health-related and persistent absences compared with peers, continuing throughout primary school. While preterm birth was more common among children with cCMV, the largest educational disparities were among term-born children. Findings offer novel population-level evidence on long-term educational outcomes of children with cCMV in England, highlighting support needs and informing cost-effectiveness analyses.

ECHILD data used:

HES APC: 2003-2008

NPD: School Census, Key Stage 1, Key Stage 2.