Spasticity in children and young people

Short Text

Spasticity in children and young people with non-progressive brain disorders: management of spasticity and co-existing motor disorders and their early musculoskeletal complications

Introduction

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.

Source guidance

The NICE guidance that was used to create the pathway.
Spasticity in children and young people. NICE clinical guideline 145 (2012)

Quality standards

Quality statements

Effective interventions library

Successful effective interventions library details

Implementation

Commissioning

These resources include support for commissioners to plan for costs and savings of guidance implementation and meeting quality standards where they apply.
These resources will help to inform discussions with providers about the development of services and may include measurement and action planning tools.
Spasticity in children and young people: costing report

Pathway information

Information for the public

NICE produces information for the public that summarises, in plain English, the recommendations that NICE makes to healthcare and other professionals.
NICE has written information for the public explaining its guidance on:
Spasticity in children and young people

Patient-centred care

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 someone does not have the capacity to make decisions, healthcare professionals should follow the Department of Health's advice on consent, the code of practice that accompanies the Mental Capacity Act and the supplementary code of practice on deprivation of liberty safeguards. In Wales, healthcare professionals should follow advice on consent from the Welsh Government.
If the person is under 16, healthcare professionals should follow the guidelines in Seeking consent: working with children. If a young person is moving between paediatric and adult services their 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.

Updates to this pathway

8 March 2013 Minor maintenance updates.

Supporting information

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.
  • reduction in spasticity
  • reduction in dystonia
  • reduction in pain or muscle spasms
  • improved posture, including head control
  • improved function
  • improved self-care (or ease of care by parents or carers).

Glossary

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

Management programmes

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
  • individualised
  • 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:

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).

Source guidance

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CG145

Treatment

Treatment

Monitoring

Monitoring

Monitoring

Checks to perform

Monitor the child or young person's condition for:

Hip displacement

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.

Hip X-ray

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.

Implementation tools

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Spasticity in children and young people: clinical audit tool – orthopaedic surgery

Source guidance

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CG145

Physical therapy

View the 'Physical therapy for children and young people with spasticity' path

Orthoses

View the 'Orthoses for children and young people with spasticity' path

Pharmacological therapy

Pharmacological therapy

Oral drugs

View the 'Oral drugs for children and young people with spasticity' path

Botulinum toxin type A

View the 'Botulinum toxin type A for treating children and young people with spasticity' path

Continuous pump-administered intrathecal baclofen

View the 'Continuous pump-administered intrathecal baclofen for treating children and young people with spasticity' path

Surgery

View the 'Surgery for children and young people with spasticity' path

Service organisation

Service organisation

Service organisation

Delivering care

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).

Source guidance

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CG145

Paths in this pathway

Pathway created: July 2012 Last updated: March 2013

Copyright © 2013 National Institute for Health and Care Excellence. All Rights Reserved.



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