The study, commissioned by national charity the Meningitis Trust, shows that one in three children who have experienced meningococcal group B disease (MenB), the most common type of bacterial meningitis in the UK, will be left with after-effects.
Bacterial meningitis and septicaemia affect around 3,400 people in the UK each year, and approximately half of these are children. The new research, led by Professor Russell Viner at the UCL Institute of Child Health, looked at the cognitive and psychological burden of MenB, as well as the major physical and neurological disabilities in children as young as three years old.
Children who had had MenB were found to be significantly more likely to experience mental health problems with one in five suffering anxiety or behavioural disorders. In addition, meningitis was found to impact on an individual’s memory - both long and short term - and leave survivors significantly more likely to experience epilepsy.
The study also identified potential learning problems. Children can be left with a borderline low IQ, leaving them behind in the classroom and potentially limiting their educational attainment. They are five times more likely to have speech and communication problems, and in later school life display poor executive function, affecting their ability to plan and organise, especially as they move from primary to secondary school.
Alongside the ‘hidden’ after-effects, the devastating physical impact of meningitis was also reported, with those affected being five times more likely to have a significant hearing impairment, with 2.4% of survivors having bilateral hearing loss requiring a cochlear implant. In addition, significant amputation with disability was witnessed.
Lead researcher, Professor Russell Viner at the UCL Institute of Child Health, said: “MOSAIC is the first comprehensive study of the outcomes of serogroup B meningococcal disease published anywhere in the world. It is also the largest study of the outcomes of meningococcal disease ever published. The high quality and importance of the data have been recognised by acceptance for fast-track publication in the prestigious international journal, The Lancet Neurology. As governments all around the world begin the process of deciding whether to introduce new MenB vaccines, the MOSAIC data will play a central role in informing these decisions.”
The findings also support the Meningitis Trust’s ongoing campaign to increase understanding of the disease and its after-effects. Meningitis Changes Futures was set up to highlight the real impact of meningitis, focussing on tackling educational difficulties. The Meningitis Trust has called for the automatic right for any child who has had meningitis to have timely and appropriate assessments throughout their educational life, picking up on any issues early on.
Sue Davie, Chief Executive of the Meningitis Trust said: “The hidden, yet devastating, after-effects of meningitis can often be dismissed. We hope that the new findings will encourage education and health professionals to recognise these, as well as the noticeable physical after-effects of meningitis, and push for children to receive the support they need and deserve.
“In addition, we hope that parents will feel more empowered by these findings. They need to be confident when advising professionals that their child might be suffering from the after-effects of meningitis in order to change perceptions, and ensure meningitis is fully investigated as a possible cause.”
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Notes to Editors
The Meningococcal Outcomes Study in Adolescents and In Children (MOSAIC), led by Professor Russell Viner at the UCL Institute of Child Health, measured the physical, psychological, social and economic burden of meningococcal group B disease (meningitis and septicaemia), to estimate the aftercare needs of those affected to support the development of a nationwide standard of care and ensure the Meningitis Trust is providing the support that is needed.
Over a three year period, 573 children and their families from across England took part. The sample included 245 children (cases) who had suffered meningococcal group B disease three years previously, when they were between the age of one month and 13 years. The other children (controls) had not suffered.
All children were assessed in the same way so that an accurate comparison could be made between the two groups. Although each person’s experience of the disease will be slightly different, the results show the average effects of MenB.
Meningitis is inflammation of the membranes that surround and protect the brain and spinal cord. It can strike quickly and kill within hours - its impact can last a lifetime. Each year in the UK there are about 3,400 new cases of bacterial meningitis and up to 500,000 people in the UK have had meningitis. It can affect anyone, but those most at risk are children under 5, young people (15 to 24) and adults over 55.
About the Meningitis Trust
The Meningitis Trust started in 1986 and, since then, has supported people as they face life after meningitis. It provides the widest range of free services and community-based support for people affected by meningitis across the UK, raises awareness of the disease and funds research into its long-term impact. For more information visit www.meningitis-trust.org.
Great Ormond Street Hospital for Children NHS Foundation Trust is the country’s leading centre for treating sick children, with the widest range of specialists under one roof. With the UCL Institute of Child Health, we are the largest centre for paediatric research outside the US and play a key role in training children’s health specialists for the future.