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A new collaboration: a parents' guide to recovering from childhood bacterial meningitis and septicaemia

Claire Wright, Medical Information Officer, Meningitis Research Foundation

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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

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A new collaboration: a parents' guide to recovering from childhood bacterial meningitis and septicaemia

  • 1. Recovering from childhood bacterial meningitis and septicaemia Your guide, My Journal
  • 2. 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
  • 3. 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
  • 5. 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
  • 6. 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
  • 7. 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)
  • 8. 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
  • 9.  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
  • 10. 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
  • 11. 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.
  • 12. 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
  • 13. 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)
  • 14. Recovery with after effects  Online factsheets at  http://www.meningitis.org/recover y  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
  • 15. 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
  • 16. Neonates  Use development checklists  www.nhs.uk/tools/pages/bi rthtofive.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
  • 17. 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
  • 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

Editor's Notes

  1. Issued in June 2010.In response to this we wanted to produce easy to read information for parents that doctors could hand over to parents at discharge. At the same time the Meningitis Trust were working on producing a journal for parents to record information about their child’s meningitis and septicaemia. Dr Alistair Thompson, vice president of education at Royal College of Paediatrics and Child Health has worked for both charities for many years and paved the way for us combine both resources into one.