Cerebral palsy in under 25s: assessment and management

National Institute for Health and Care Excellence


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Risk factors

  • Recognise the following as independent risk factors for cerebral palsy:
    • antenatal factors:
      • preterm birth (with risk increasing with decreasing gestational age)
      • chorioamnionitis
      • maternal respiratory tract or genito-urinary infection treated in hospital
    • perinatal factors:
      • low birth weight
      • chorioamnionitis
      • neonatal encephalopathy
      • neonatal sepsis (particularly with a birth weight below 1.5 kg)
      • maternal respiratory tract or genito-urinary infection treated in hospital
    • postnatal factors:
      • meningitis
  • Provide an enhanced clinical and developmental follow-up programme for children who have any of the risk factors listed above

Cerebral palsy algorithm—identification

Algorithm for the identification of cerebral palsy

Looking for signs of cerebral palsy

  • Provide an enhanced clinical and developmental follow-up programme by a multidisciplinary team for children up to 2 years (corrected for gestational age) who are at increased risk of developing cerebral palsy
  • Consider using the General Movement Assessment (GMA) during routine neonatal follow-up assessments for children between 0 and 3 months who are at increased risk of developing cerebral palsy
  • Recognise the following as possible early motor features in the presentation of cerebral palsy:
    • unusual fidgety movements or other abnormalities of movement, including asymmetry or paucity of movement
    • abnormalities of tone, including hypotonia (floppiness), spasticity (stiffness) or dystonia (fluctuating tone)
    • abnormal motor development, including late head control, rolling and crawling
    • feeding difficulties
  • Refer children who are at increased risk of developing cerebral palsy and who have any of the abnormal features listed above to a child development service for an urgent assessment
  • Recognise that the most common delayed motor milestones in children with cerebral palsy are:
    • not sitting by 8 months (corrected for gestational age)
    • not walking by 18 months (corrected for gestational age)
    • early asymmetry of hand function (hand preference) before 1 year (corrected for gestational age)
  • Refer all children with delayed motor milestones to a child development service for further assessment
  • Refer children who have persistent toe walking to a child development service for further assessment
  • If there are concerns that a child may have cerebral palsy but a definitive diagnosis cannot be made, discuss this with their parents or carers and explain that an enhanced clinical and developmental follow-up programme will be necessary to try to reach a definite conclusion

Red flags for other neurological disorders

  • Review a diagnosis of cerebral palsy if clinical signs or the child's development do not follow the patterns expected for cerebral palsy, taking into account that the functional and neurological manifestations of cerebral palsy change over time
  • Recognise the following as red flags for neurological disorders other than cerebral palsy, and refer the child or young person to a specialist in paediatric neurology if any of these are observed:
    • absence of known risk factors
    • family history of a progressive neurological disorder
    • loss of already attained cognitive or developmental abilities
    • development of unexpected focal neurological signs
    • MRI findings suggestive of a progressive neurological disorder
    • MRI findings not in keeping with clinical signs of cerebral palsy

Multidisciplinary care

  • Refer all children with suspected cerebral palsy to a child development service for an urgent multidisciplinary assessment, in order to facilitate early diagnosis and intervention
  • Recognise that children and young people with cerebral palsy and their parents or carers have a central role in decision-making and care planning
  • Ensure that the child or young person with cerebral palsy has access to a local integrated core multidisciplinary team that:
    • is able to meet their individual needs within agreed care pathways
    • can provide the following expertise, as appropriate, through a local network of care:
      • paediatric or adult medicine
      • nursing care
      • physiotherapy
      • occupational therapy
      • speech and language therapy
      • dietetics
      • psychology
    • can enable access to other services within their local or regional network as appropriate, including:
      • paediatric or adult neurodisability, neurology, neurorehabilitation, respiratory, gastroenterology and surgical specialist care
      • orthopaedics
      • orthotics and rehabilitation services
      • social care
      • visual and hearing specialist services
      • teaching support for preschool and school-age children, including portage (home teaching services for preschool children)
  • Ensure that routes for accessing specialist teams involved in managing comorbidities associated with cerebral palsy are clearly defined on a regional basis
  • Recognise that ongoing communication between all levels of service provision in the care of children and young people with cerebral palsy is crucial, particularly involvement of primary care from diagnosis onwards

Medicines optimisation

Movement and posture

  • For guidance on managing problems with movement and posture in children and young people with cerebral palsy, see the NICE guideline on spasticity in under 19s

Information and support

  • Ensure that information and support focuses as much on the functional abilities of the child or young person with cerebral palsy as on any functional impairment
  • Provide clear, timely and up-to-date information to parents or carers on the following topics:
    • diagnosis
    • aetiology
    • prognosis
    • expected developmental progress
    • comorbidities
    • availability of specialist equipment
    • resources available and access to financial, respite, social care and other support for children and young people and their parents, carers and siblings
    • educational placement (including specialist preschool and early years settings)
    • transition
  • Ensure that clear information about the 'patient pathway' is shared with the child or young person and their parents or carers (for example, by providing them with copies of correspondence). Follow the principles in the recommendations about communication, information and shared decision making in the NICE guideline on patient experience in adult NHS services
  • Provide information to the child or young person with cerebral palsy, and their parents or carers, on an ongoing basis. Adapt the communication methods and information resources to take account of the needs and understanding of the child or young person and their parents or carers. For example, think about using 1 or more of the following:
    • oral explanations
    • written information and leaflets
    • mobile technology, including apps
    • augmentative and alternative communication systems
  • Work with the child or young person and their parents or carers to develop and maintain a personal 'folder' in their preferred format (electronic or otherwise) containing relevant information that can be shared with their extended family and friends and used in health, social care, educational and transition settings. Information could include:
    • early history
    • motor subtype and limb involvement
    • functional abilities
    • interventions
    • medication
    • comorbidities
    • preferred methods of communication
    • any specialist equipment that is used or needed
    • care plans
    • emergency contact details
  • Ensure that the child or young person and their parents or carers are provided with information, by a professional with appropriate expertise, about the following topics relevant to them that is tailored to their individual needs:
    • menstruation
    • fertility and contraception
    • sex and sexuality
    • parenting
  • Provide information to the child or young person and their parents or carers, and to all relevant teams around them, about the local and regional services available (for example, sporting clubs, respite care and specialist schools) for children and young people with cerebral palsy, and how to access them
  • Provide information about local support and advocacy groups to the child or young person and their parents or carers

Information about prognosis

  • Provide the following information to parents or carers about the prognosis for walking for a child with cerebral palsy:
    • the more severe the child's physical, functional or cognitive impairment, the greater the possibility of difficulties with walking
    • if a child can sit at 2 years of age it is likely, but not certain, that they will be able to walk unaided by age 6
    • If a child cannot sit but can roll at 2 years of age, there is a possibility that they may be able to walk unaided by age 6
    • If a child cannot sit or roll at 2 years of age, they are unlikely to be able to walk unaided
  • Recognise the following in relation to prognosis for speech development in a child with cerebral palsy, and discuss this with parents or carers as appropriate:
    • around one in two children with cerebral palsy have some difficulty with elements of communication
    • around one in three children have specific difficulties with speech and language
    • the more severe the child's physical, functional or cognitive impairment, the greater the likelihood of difficulties with speech and language
    • uncontrolled epilepsy may be associated with difficulties with all forms of communication, including speech
    • a child with bilateral spastic, dyskinetic, or ataxic cerebral palsy is more likely to have difficulties with speech and language than a child with unilateral spastic cerebral palsy
  • Provide the following information to parents or carers, as appropriate, about prognosis for life expectancy for a child with cerebral palsy:
    • the more severe the child's physical, functional or cognitive impairment, the greater the likelihood of reduced life expectancy
    • there is an association between reduced life expectancy and the need for enteral tube feeding, but this reflects the severity of swallowing difficulties and is not because of the intervention

Using MRI to assess prognosis

  • Do not rely on MRI alone for predicting prognosis in children with cerebral palsy
  • Take account of the likely cause of cerebral palsy and the findings from MRI (if performed) when discussing prognosis with the child or young person and their parents or carers
  • Please refer to the full guideline for recommendations on:
    • eating, drinking, and swallowing difficulties
    • speech, language, and communication
    • optimising nutritional status
    • managing saliva control
    • low bone mineral density
    • pain, discomfort, and distress
    • sleep disturbances
    • mental health problems
    • registering and processing sensory information
    • information on other comorbidities
    • care needs
    • transition to adults' services


References

full guideline available from...
National Institute for Health and Care Excellence, Level 1A, City Tower, Piccadilly Plaza, Manchester, M1 4BT
www.nice.org.uk/guidance/NG62

National Institute for Health and Care Excellence. Cerebral palsy in under 25s: assessment and management. February 2017.


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