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Spasticity in children and young people
This pathway covers the management of spasticity and co-existing motor disorders and their early musculoskeletal complications in children and young people (from birth up to their 19th birthday) with non-progressive brain disorders.
Cerebral palsy is the most common condition associated with spasticity in children and young people. The incidence of cerebral palsy is not known, but its prevalence in the UK is 186 per 100,000 population, with a total of 110,000 people affected. The guideline covers the management of spasticity associated with cerebral palsy, but not all aspects of the management of cerebral palsy.
The impact of spasticity and co-existing motor disorders and their early musculoskeletal complications on the child or young person varies. Common problems include impaired motor function affecting the person's ability to participate in society, pain from muscle spasms, motor developmental delay and difficulties with daily care due to the onset of secondary complications of spasticity. Management should be tailored to meet the problems faced by the individual child or young person and their individual goals.
There is considerable variation in practice in managing spasticity, including variation in the availability of treatments and the intensity of their use. This pathway will help healthcare professionals to select and use appropriate treatments for individual children and young people.
The NICE guidance that was used to create the pathway.
Spasticity in children and young people. NICE clinical guideline 145 (2012)
Selective dorsal rhizotomy for spasticity in cerebral palsy. NICE interventional procedure guidance 373 (2010)
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Information for the public
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NICE has written information for the public explaining its guidance on:
Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution for England – all NICE guidance is written to reflect these. Treatment and care should take into account individual needs and preferences. People should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If the person is under 16, their family or carers should also be given information and support to help the child or young person to make decisions about their treatment. Healthcare professionals should follow the Department of Health's advice on consent. If someone does not have capacity to make decisions, healthcare professionals should follow the code of practice that accompanies the Mental Capacity Act and the supplementary code of practice on deprivation of liberty safeguards.
For young people moving between paediatric and adult services, care should be planned and managed according to the best practice guidance described in the Department of Health’s Transition: getting it right for young people.
Adult and paediatric healthcare teams should work jointly to provide assessment and services to young people. Diagnosis and management should be reviewed throughout the transition process, and there should be clarity about who is the lead clinician to ensure continuity of care.
Updates to this pathway
6 November 2013 Minor maintenance updates.
8 March 2013 Minor maintenance updates.
Following treatment with botulinum toxin type A, continuous pump-administered intrathecal baclofen, orthopaedic surgery or selective dorsal rhizotomy, provide an adapted physical therapy programme. Ensure that children and young people and their parents or carers understand that this programme is an essential component of management.
A neurotoxin produced by the bacterium Clostridium botulinum that blocks neurotransmitter release at peripheral cholinergic nerve terminals. Injection into a muscle reduces spasticity.
Direct administration of baclofen into the fluid-filled space around the spinal cord (the intrathecal space) using a catheter and infusion pump. The pump is implanted in the abdominal cavity and allows a continual controlled delivery of baclofen adjusted according to need.
Involuntary, sustained, or intermittent muscle contractions that cause twitching and repetitive movements, abnormal postures or both.
The ability to use small muscle groups, often in coordination with the eyes, to perform precision activities such as writing or fastening buttons.
Spasticity involving a specific muscle or group of muscles.
A detailed approach to analysing the component phases of walking using instrumentation or video analysis in addition to clinical observation. This is undertaken to evaluate a child or young person's ability and style of walking and to plan or assess treatment.
The ability to use large muscle groups to perform body movements such as sitting, standing, walking and running.
Direct injection of baclofen into the fluid-filled space around the spinal cord (the intrathecal space) using a lumbar puncture needle or a temporary spinal catheter in order to assess the likely response to continuous pump-administered baclofen treatment.
A physical therapy intervention in which the child or young person actively stretches their muscles with the aim of increasing range of movement.
The normal state of continuous passive partial contraction in a resting muscle. Muscle tone is important in maintaining posture. Increased muscle tone (hypertonia) is associated with an abnormal resistance to passive stretch, while reduced muscle tone (hypotonia) is associated with floppiness of the limbs or trunk and poor posture.
A multidisciplinary group of healthcare and other professionals working in a network of care to deliver a clinical service.
The degree of motion through which a joint can be moved by an outside force without active participation by the child or young person themself (for example, movement by another person).
The range of motion, usually measured in degrees, through which a joint can move.
An adverse effect on musculoskeletal structure that occurs as a result of spasticity (for example, a contracture or abnormal torsion).
A neurosurgical procedure in which some of the sensory nerves that contribute to spasticity in the lower limb are cut at the point where they enter the spinal cord.
A specific form of increased muscle tone (hypertonia) in which one or both of the following are present:
- the resistance to externally imposed movement increases with increasing speed of stretch and varies with the direction of joint movement
- the resistance to externally imposed movement increases rapidly beyond a threshold speed or joint angle.
A physiotherapy technique where a specific goal is identified and the child or young person carries out exercises or activities using the affected limb or limbs to improve their performance.
An approach to physical therapy in which an unaffected arm is temporarily restrained to encourage use of the other arm.
Shortening of muscle tendons, ligaments and soft tissues resulting in a limitation of joint movement. Usually, muscle shortening is the primary abnormality, but prolonged immobility or scarring may also contribute.
Abnormal ankle plantarflexion (movement of the foot at the ankle joint in a downward direction). This can, for example, result in the child or young person walking on tiptoe.
Dystonia involving a specific muscle or group of muscles.
The ability to perform normal activities or actions. Such function may be impaired by spasticity and associated motor disorders and by the complications of spasticity.
Gross Motor Function Classification System. This is a five-point scale that describes gross motor function: level I, walks without restrictions; level II, walks without assistive devices; level III, walks with assistive devices; level IV, has limited self-mobility; level V, has severely limited self-mobility even with assistive devices.
Movement of the top of the thigh bone that connects with the pelvis (the femoral head) from its normal position in the socket joint of the hip (the acetabulum). This movement is often measured by reporting the degree of displacement seen on X-ray (known as the hip migration percentage).
Abnormal curvature of the spine when viewed from the side of the body that results in a hunched or slouching position.
A physical therapy intervention involving sustained stretching using positioning with equipment, orthoses or serial casting.
Linked groups of healthcare professionals and organisations working in an agreed and coordinated manner to deliver a clinical service. A network is not constrained by existing professional, organisational or institutional boundaries.
(plural, orthoses) An artificial device or appliance used to support, align, prevent, or correct deformities or to improve musculoskeletal function.
Physiotherapy and/or occupational therapy.
An abnormal lateral curvature of the spine viewed from in front of or behind the child or young person.
Any effect experienced by a child or young person as a result of spasticity. This may be symptomatic (for example, pain or difficulty walking) or a complication affecting the structure of the musculoskeletal system (see secondary complications of spasticity).
The successive use of casts with the aim of progressively lengthening muscles and other non-bony tissues such as ligaments and tendons thereby reducing the effect of contractures by passive stretching to gradually improve the range of movement.
A surgical procedure where two or more vertebrae are joined to prevent movement between them.
Child or young person with spasticity
Child or young person with spasticity
Principles of care
Principles of care
Principles of care
Following diagnosis, ensure that all children and young people with spasticity are referred without delay to an appropriate member of the network team.
Offer a management programme that is:
- developed and implemented in partnership with the child or young person and their parents or carers
- goal focused.
When formulating a management programme take into account its possible impact on the individual child or young person and their family.
Involving the child and their parents and carers
Identify and agree with children and young people and their parents or carers assessments and goals that:
- are age and developmentally appropriate
- focus on the following domains of the World Health Organization's International Classification of Functioning, Disability and Health (children and youth version):
- body function and structure
- activity and participation.
Recording and sharing the goals
Record the child or young person's individualised goals and share these goals with healthcare professionals in the network team and, where appropriate, other people involved in their care.
Help children and young people and their parents or carers to be partners in developing and implementing the management programme by offering:
- relevant, and age and developmentally appropriate, information and educational materials
- regular opportunities for discussion and
- advice on their developmental potential and how different treatment options may affect this.
Children and young people with cognitive impairments
Carefully assess the impact of spasticity in children and young people with cognitive impairments:
- be aware that the possible benefit of treatments may be more difficult to assess in a child or young person with limited communication
- ensure that the child or young person has access to all appropriate services.
Supporting the child or young person and their parents or carers
Offer contact details of patient organisations that can provide support, befriending, counselling, information and advocacy.
Ensure that children and young people have timely access to equipment necessary for their management programme (for example, postural management equipment such as sleeping, sitting or standing systems).
Checks to perform
Monitor the child or young person's condition for:
- the response to treatments
- worsening of spasticity
- developing secondary consequences of spasticity, for example pain or contractures
- the need to change their individualised goals.
Recognise the following clinical findings as possible indicators of hip displacement (hip migration greater than 30%):
- pain arising from the hip
- clinically important leg length difference
- deterioration in hip abduction or range of hip movement
- increasing hip muscle tone
- deterioration in sitting or standing
- increasing difficulty with perineal care or hygiene.
Offer a hip X-ray to assess for hip displacement:
- if there are clinical concerns about possible hip displacement
- at 24 months in children with bilateral cerebral palsy.
Consider repeating the hip X-ray annually in children or young people who are at GMFCS level III, IV or V.
Consider repeating the hip X-ray after 6 months in children and young people where the initial hip migration is greater than 30%, and then consider repeating the hip X-ray every 6 months after this if the hip migration is increasing by more than 10 percentage points per year.
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Botulinum toxin type AView the 'Botulinum toxin type A for treating children and young people with spasticity' path
Continuous pump-administered intrathecal baclofenView the 'Continuous pump-administered intrathecal baclofen for treating children and young people with spasticity' path
Children and young people with spasticity should have access to a network of care that uses agreed care pathways supported by effective communication and integrated team working.
The network of care should provide access to a team of healthcare professionals experienced in the care of children and young people with spasticity. The network team should provide local expertise in paediatrics, nursing, physiotherapy, and occupational therapy. Access to other expertise, including orthotics, orthopaedic surgery and/or neurosurgery and paediatric neurology, may be provided locally or regionally.
If a child or young person receives treatment for spasticity from healthcare professionals outside the network team, this should be planned and undertaken in discussion with the network team to ensure integrated care and effective subsequent management.
The network of care should have a pathway for monitoring children and young people at increased risk of hip displacement.
Supporting the child or young person and their parents or carers
The network team should have a central role in transition to prepare young people and their parents or carers for the young person's transfer to adult services.
There are details about service organisation for specific types of treatment in the relevant paths (see who should provide botulinum toxin type A treatment, performing an assessment, performing intrathecal baclofen testing, assessing the response to intrathecal baclofen, performing orthopaedic surgery and selective dorsal rhizotomy in this pathway).
Paths in this pathway
- Physical therapy for children and young people with spasticity
- Orthoses for children and young people with spasticity
- Oral drugs for children and young people with spasticity
- Botulinum toxin type A for treating children and young people with spasticity
- Continuous pump-administered intrathecal baclofen for treating children and young people with spasticity
- Using continuous pump-administered intrathecal baclofen to treat spasticity in children and young people
- Surgery for children and young people with spasticity
Pathway created: July 2012 Last updated: November 2013
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