Stroke in Childhood

Overview

This Guidelines summary provides a concise overview for GPs on the management of stroke in childhood. Please refer to the full guideline for the complete set of recommendations.

Acute Diagnosis

• Use the FAST criteria to determine stroke in children and young people, but do not rule out stroke in the absence of FAST signs
• Undertake urgent brain imaging of children and young people presenting with one or more of the following symptoms:
  • acute focal neurological deficit
  • aphasia
  • reduced level of consciousness (age-appropriate Glasgow coma scale <12, or ‘Alert, Voice, Pain, Unresponsive’ <V at presentation)
• Consider urgent brain imaging for children and young people presenting with the following symptoms which may be indicative of stroke:
  • new onset focal seizures
  • new onset severe headache
  • altered mental status including transient loss of consciousness or behavioural changes
  • new onset ataxia, vertigo or dizziness
  • sudden onset of neck pain or neck stiffness
  • witnessed acute focal neurological deficit which has since resolved
• Be aware that the following non-specific symptoms can be present in a child presenting with stroke:
  • nausea or vomiting
  • fever
• Be aware that acute focal neurological signs may be absent, and that attention should be given to parental or young person concerns on the presentation of unusual symptoms

Referral and Care Pathway

• Community medical services and ambulance services (including call handlers, telephone triage and advice services such as NHS 111 and primary care reception staff) should be trained to recognise children and young people with symptoms suggesting an acute stroke as an emergency requiring urgent transfer to hospital
• Children and young people seen by ambulance clinicians, or primary care providers outside hospital with the sudden onset of acute focal neurological symptoms should be screened for hypoglycaemia with a capillary blood glucose, and for stroke using a simple screening tool such as FAST. Where these are normal or negative, but stroke is still suspected, the acute stroke pathway should be used
• Children and young people with persisting neurological symptoms who screen positive using a validated tool (or who screen negative, but in whom stroke is suspected) should be transferred to an emergency department with paediatric services urgently
• The possibility of stroke should still be considered in children and young people where there is a clear history of an acute neurological deficit which has since resolved
• The pre-hospital care of children and young people with suspected stroke should minimise time from call to arrival at hospital and should include a hospital pre-alert to expedite specialist assessment and treatment

 Pre-hospital Pathway

Algorithm 1: Pre-hospital Pathway for the Management of Suspected Childhood Stroke

• The acute paediatric stroke pathway, according to a locally agreed protocol, should be triggered upon arrival at the emergency department
• Care should be consultant delivered at the earliest opportunity, involving a multi-specialty team according to the child’s clinical need
• If the child has sickle cell disease (SCD) paediatric haematologists should also be involved in acute management
• Local protocols should be developed to coordinate liaison between specialties at the secondary and regional centres (including acquisition and transfer of images) and to facilitate clinically appropriate and time-sensitive transfers between centres. This could involve the paediatric intensive care (PIC) transport network, or use local arrangements already in existence for management of other paediatric neurological emergencies, e.g. acute neurotrauma
• Parents/carers and young people should be regularly informed and updated throughout the care process. This should include age-appropriate and multi format information for the child or young person as well as the parent/carer about the condition/suspected condition, investigation plans and findings, and management plans
• Where possible and appropriate the young person and parents/carers should be actively involved in decision making

Framework for Early Functional Assessment

• Provide clinical assessment of a child’s body structures and functions and activities, by members of the relevant hospital multidisciplinary team (including, for example, occupational therapists, physiotherapists, speech and language therapists), as soon as possible during hospital admission (within 72 hours), with consideration of the child’s age and developmental abilities
• Adoption of a collaborative approach to working with children, young people and families is important in supporting identification of priority areas for assessment and intervention
• Involve the parents/carers, family and child/young person as key participants in the assessment of activities (e.g. mobilising, dressing, eating), and where clinically appropriate the identification of early rehabilitation priorities
• Parents/carers and young people should be regularly informed and updated throughout the care process. This should include age-appropriate and multi format information for the parent/carer and child/young person about their condition/suspected condition, investigation plans and findings, and management plans including rehabilitation
• Use the International Classification of Functioning, Disability and Health (ICF) framework to identify domains for assessment and intervention, including impairments in body structure and functions and activity limitations (please note that common clinical terminology has been used below, with ICF terminology in brackets)
• Consider the use of both clinical and instrumental methods to assess body structures and function. Key areas to consider include:
  • swallow safety (ingestion)
  • hydration and nutrition
  • pain—motor function (muscle functions, movement functions)
  • vision (seeing) and hearing
  • sleep
  • sensation and perception
  • fatigue
• Assess activity limitations, using clinical and instrumental methods as appropriate. Key areas to consider are:
  • mobility and gross motor activities (walking and moving, changing and maintaining body position)
  • eating and drinking (ingestion)
  • self-care (washing, dressing, toileting)
  • communication, including language understanding and expressive skills (receiving, producing and conversation)
  • social interaction (interpersonal interactions and relationships)
  • behaviour and emotion (general tasks and demands, including handling stress and other psychological demands, and managing one’s own behaviour)
  • cognition (learning and applying knowledge)
  • play and fine motor activities
• Assess the communication, information and support needs of the parents/carers, family and child/young person during early functional assessment
• Explain the purpose of assessments to the parents/carers, family and child/young person
• Consider the use of both functional and developmental assessments to describe and monitor change in children’s abilities and limitations
• Undertake at least weekly multidisciplinary review of abilities and rehabilitation needs during the inpatient stage
• Initiate early liaison with community-based medical, nursing, occupational therapists, physiotherapists, psychologists, orthoptists, speech and language therapists and other allied health professionals to establish links with local networks
• Consider the use of technology to support the exchange of information and maintenance of communication

Risk Factors

• Take these factors (mentioned in the subheadings below) into account when considering a need for counselling in high risk groups
• Information on risk of recurrence and how to minimise risk should be delivered in face to face conversation with parents/carers and young people (where appropriate) and supported where possible with web-based or written materials for later reference. The information provided should be age-appropriate and multi-format and relevant to the child or young person as well as the parent/carer

Recurrent Arterial Ischaemic Stroke

• Be aware of increased risk of recurrence in children and young people with arterial ischaemic stroke and the following risk factors:
  • arteriopathy (especially if progressive on interval imaging)
  • moyamoya
  • arteriopathy in SCD
  • congenital heart disease (especially if either infection was present at sentinel stroke or there is a thrombotic state)
  • thrombophilia (e.g. homozygosity for MTHFR mutation, protein C and/or protein S deficiency)
  • low birthweight

Recurrent Haemorrhagic Stroke

• Be aware of increased risk of recurrence in children and young people with haemorrhagic stroke and the following risk factors:
  • arteriovenous malformation (AVM)
  • cerebral arterial aneurysms
  • cavernous malformations
  • moyamoya
  • SCD
  • all severe bleeding disorders
  • ongoing anticoagulation
  • illicit drug use e.g. amphetamines and cocaine

General Principles for Rehabilitation

Key Components and General Principles to Optimise Recovery Include the Following:

• Individualised and patient-centred therapy strategies including consideration of the context in which the intervention takes place
• Identifying and assessing the rehabilitation needs of the child/young person and understanding that these needs are likely to change over time
• The practice and frequent repetition of goal directed task specific purposeful activities
• Holistic multidisciplinary working which includes the child and the family. This multidisciplinary team should include healthcare professionals from the following domains:
  • medical personnel
  • nursing
  • physiotherapy
  • occupational therapy
  • speech and language therapy
  • dietetics
  • clinical neuropsychology/clinical psychology
  • social work
  • orthoptics
  • play specialist
• There should be access to pharmacy, orthotics, specialist seating, assistive technology and information, advice and support for people with stroke and their family/carers
• Addressing all dimensions of the child’s health and wellbeing as reflected in the ICF
• Working towards pre-defined SMART (Specific, Measurable, Agreed, Realistic and Time-bound) goals/principles that have been set with the child/young people and their family and reflect what is meaningful and relevant to them
• The use of outcome measures to measure function, monitor progress and determine change
• The recognition of the need to support the child/young person and family in adjusting to changed abilities and circumstances

Rehabilitative Interventions

• Please refer to the full guideline for recommendations on:
  • motor function and mobility
  • sensory functions
  • dysphagia
  • communication, speech and language functions
  • cognition

Mental Health

• Refer children, young people and their families through local children and young people’s mental health services or paediatric psychology services within hospitals for psychotherapeutic interventions
• Tertiary services such as regional neuropsychology or paediatric psychology services should train, supervise and support local services
• Treat behavioural difficulties with adaptations to existing parenting programmes such as Triple P, Signpost, and acceptance and commitment therapy
• Consider the use of technology to support and deliver family interventions as part of a package of individualised treatment, rather than only as a method to provide information
• Develop acquired brain injury (ABI) specific adaptations to support local children and young people’s mental health services to provide appropriate input
• Consider individualised cognitive behavioural therapy (CBT) based approaches for treatment of mood related problems
• Consider the presence and impact of fatigue on daily life abilities and mental health. Strategies including graded activities to balance demands across the day can be useful
• Consider the benefits of pharmacological treatment in conjunction with other treatment

Interpersonal Relationships and Interactions/Psychosocial (Social Relationships)

• Refer children, young people and families to psychology services when there are concerns about social relationships
• Tertiary services such as regional neuropsychology or paediatric psychology services should train, supervise and support local services
• Include parent/carer, child/young person, and teacher reports using standardised questionnaires in assessment and monitoring of family and peer relationships
• Involve the family in interventions aimed at improving social relationships between parent/carer and child/young person
• Involve peers in interventions aimed at improving peer relationships
• Consider teaching metacognitive strategies to support improvement in social interactions
• Consider individual tuition to help children and young people to use the internet safely and effectively for social interaction. Train and support families to be confident in supervising their child’s use of social media
• Promote the development of acquired brain injury (ABI) specific training packages within schools, to include development of social relationships

Learning and Applying Knowledge

• Health professionals should provide regular consultation to educators, including both advice and brain injury training. This should be with a professional with experience of both education and acquired brain injury
• Be aware that a child or young person’s needs may evolve or change over time necessitating reassessment and review of any statuary supports in place e.g. the Education, Health and Care Plan (EHCP)

Long-term Care: Transfer and Transition

• Primary care professionals, particularly GPs, have a key role in coordinating and supporting joined up care across health education and care sectors. The GP should also be actively engaged in the process of transition planning for a young person moving from child to adult healthcare services

Managing Educational and Social Care Transition

• Ensure regular, effective collaboration and communication between health, education, and social care professionals throughout the child’s schooling to identify and respond to their specific needs and disabilities. This can include meetings, joint assessments and sharing of relevant knowledge and skills to optimise and personalise the provision of learning support
• Ensure health and education professionals have access to information about child stroke
• Establish channels of communication between school and the family from school entry/re-entry
• Consider the individual communication needs of young people after brain injury
• Be aware that children and young people with stroke may require a flexible, holistic, integrated approach in supporting them, ranging from targeted therapy or educational interventions for particular difficulties, to a comprehensive EHCP
• Integrate therapy interventions into the child’s educational provision where possible, to minimise school absence and promote inclusion
• Ensure the early, active participation of the young person in planning their transition from school to higher education or work
• The creation of a long-term condition passport can support information sharing and reduce repetition
• Provide the young person with appropriate support in planning for adult life and building life skills in the context of their health condition
• Consider the provision of a named key worker to support the young person and family in transitioning into and through education

The Transition of a Young Person Into Adult Healthcare

• Children with SCD, on long-term transfusion for prevention of stroke, should be referred to an adult unit where transfusion therapy can continue to be provided and support is given to continue transfusion during and after the transitional period
• Be aware that higher levels of support may be needed during the transition to adulthood and adult services, and that paediatric and adult stroke services should have a written protocol for transfer
• Consult the National Institute for Health and Care Excellence (NICE) guideline on ‘Transition from children’s to adults’ services for young people using health or social care services
• Inform children and young people and their parents/carers about the professionals involved in future management and how to gain access to them
• Ensure clear delineation of roles and responsibilities through preferably a face to face meeting during the transition process
• Identify one named key worker either from social care, health or education who can be the main point of contact for the young person and family during the transition process
• Provide clear written information about the professionals involved, their role and the transition process
• Be aware of the issues a young person recovering from stroke may face. This includes health related issues, mobility and self-help skill difficulties, neuro-behavioural issues, mental health issues, educational difficulties, and issues relating to reintegration with social life
• Transition between previous and future care givers with the young person and their family in a dedicated transition session, either in a health or education setting, or in the young person’s house
• Be aware that there may be the need to meet multiple times to ensure both young person and their family clearly understand the process and to address the issues that the young person may face