a new collaboration: a parents' guide to recovering from childhood bacterial meningitis and...
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Claire Wright, Medical Information Officer, Meningitis Research FoundationTRANSCRIPT
Recovering from childhood bacterial meningitis and septicaemia
Your guide, My Journal
Introduction
Estimated 3,400 cases per year Approximately 2,100 in children 25% of children who survive will be left
with serious long-term after effects Babies under 1 month of age (neonates)
are more likely to be left with long-term problems than older children
2003 MRF member survey
Only 23% had a hearing test within one month of being well enough
25% of responders had no hearing test at all 67% experienced short term after effects
27% behavioural, emotional and psychological problems
16% fatigue 9% headaches
2/3 who required support for psychological problems had difficulty accessing it
Many with after effects who required therapy had difficulty accessing it
NICE Clinical Guideline 102
Considerations
Different types of outcome Children that make a good recovery Children who have temporary or short term
problems Children who recover with long-term after effects Children who go on to experience effects at a later
date Children whose after effects are uncertain
(neonates and babies) Diverse range and severity of after effects Impact on the wider family
The Resource
Jointly produced by MRF and MT Your guide
In depth information about recovery after childhood meningitis and septicaemia
My Journal A place for parents and children to keep a
personal record of the illness, recovery and follow-up care
Online information Houses downloadable fact sheets about specific
after effects and after care
Good recovery
Ease anxiety Educate about the after care all
children should receive Hearing test Review with paediatrician
Raise awareness of common short term problems
Raise awareness of possible later developing problems to look out for Learning and behavioural problems Growth plate damage (septicaemia
only)
Short term problems
Fatigue Headaches Change in behaviour
Temper tantrums, clinginess, bed-wetting, nightmares, mood swings, aggression, restlessness, inability to concentrate.
Research shows that this is common in the first year following illness. Shears et al. Pediatr Crit Care Med 2005 Vol. 6, No. 1
Loss of skills/co-ordination problems
The brain continues to develop into early adulthood
If a brain injury occurred because during the acute illness, some problems may not show up until the child is older
Executive functions: planning, problem solving etc are not often used until a child gets older
The transition from primary to secondary school can be a time when some of these problems start to become apparent
Problems with learning and behaviour
Problems with learning and behaviour
Viner et al. Lancet Neurol. 2012 Sep;11(9):774-83 3 – 4 years post MenB significantly poorer cognitive function
in terms of IQ, executive function, planning, and memory than controls
Sumpter et al. Brain Injury, 2011, 1–8, iFirst Children with meningitis aged 5 to 16
years admitted to RHSC from Jan 1991 to Jan 2007
8 years post illness 32% parents 19% teachers reported clinically significant behavioural difficulties using SDQ
Problems with learning and behaviour
Survivors of a national incidence study of BM in infancy (Arch Dis Child 1991;66:603–7) evaluated again at 13 and16 years of age Halket et al. Arch Dis Child 2003;88:395–398
Parents of children who had meningitis more than twice as likely to classify their child’s behaviour as “not normal” compared to controls
De Louvoius et al. Arch Dis Child 2007;92:959–962. ‘Healthy’’ survivors of bacterial meningitis in infancy pass
significantly fewer GCSE examinations than the controls and had proportionately less educational support.
Growth Plate Damage
Associated with Purpura fulminans as a result of septicaemia
Caused by damage to the growth plates during the acute illness
Growth arrest or bone growth deformity Your guide
Advises that limb length should be monitored in children who have scarring over their joints
Alerts parents to look for loss of wrist and forearm movement if there is scarring in this area
Recovery with after effects
Wide range of after effects Hearing loss and tinnitus and balance problems Hydrocephalus Sight loss Epilepsy Problems with movement and co-ordination Behavioural/emotional problems Learning, Memory and concentration problems Speech and language problems
After effects specific to septicaemia Skin and muscle damage Amputations Bone growth problems Organ damage (such as kidney failure)
Recovery with after effects
Online factsheets at http://www.meningitis.org/reco
very http://www.meningitis-trust.org
/recovery My Journal is a great place to
record: Information specific to your
child Information about ongoing
medication Keep track of your child’s
appointments Useful to share information in
the Journal with others involved in the care of the child
Neonates
50% have a disability at 5 years if age
Uncertainty at discharge over whether there will be long term after effects due to ABI as they have not reached developmental milestones
Neonates
Use development checklists www.nhs.uk/tools/pages/
birthtofive.aspx ‘My Journal’ helps record
progress both before and after the paediatric review
How to access further care Encourage sharing of
information in ‘My Journal’ with health/educational professionals if needed
Summary
Ease anxiety by providing detailed information to parents and children at hospital discharge
Raise awareness of the aftercare that all children should receive after discharge
Raise awareness of potential late onset after effects Educate parents about the after care available for
serious and long-term after effects of bacterial meningitis and septicaemia
Allows parents to keep a record of their child’s progress and easily share information about their child’s illness with relevant health and educational professional
NICE Quality Standard 19
Acknowledgements
Dr Janice Alistair Dr Lorriane Als, Research Psychologist Dr Helen Campbell, Senior Clinical Scientist, Public Health England Miss Naomi Davis, Consultant in Paediatric Orthopaedic Surgery Dr Liam Dorris, Consultant Paediatric Neuropsychologist Professor Elena Garralda, Child and Adolescent Psychiatry Dr Scott Hackett, Consultant Paediatrician Vicki Kirwin, Audiology Specialist Dr Rachel Kneen, consultant Paediatric Neurologist Professor Simon Kroll, Paediatrics and Molecular Diseases Sheila McQueen, Academic Head of Nursing Science Mr Fergal Monsell, Consultant Paediatric Orthopaedic Surgeon Dr Simon Nadel, Consultant in Paedaitric Intensive Care Dr Nelly Ninis, Consultant Paediatrician, Dr Ifeanyichukwu Okike, Clinical Research Fellow Dr Mary Ramsay, Head of Immunisation, Public Health England Dr Andrew Riordan, Consultant in Paediatric Infectious Diseases and Immunology Ms Fiona Smith Dr Alistair Thompson Dr Andrew Winrow, Consultant Paeditrician