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Spasticity in children and young people
Short Text
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.
Service improvement and audit
These resources provide help with planning ahead for NICE guidance, understanding where you are now, and conducting improvement initiatives.
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:
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 who may benefit from treatment with botulinum toxin type A
Child or young person with spasticity who may benefit from treatment with botulinum toxin type A
When to consider botulinum toxin type A
When to consider botulinum toxin type A
When to consider botulinum toxin type A
Treatment for the upper and lower limb
Consider botulinum toxin type A treatmentAt the time of publication (July 2012), some botulinum toxin type A products had UK marketing authorisation for use in the treatment of focal spasticity in children, young people and adults, including the treatment of dynamic equinus foot deformity due to spasticity in ambulant paediatric cerebral palsy patients, 2 years of age or older. Other products had UK marketing authorisation only for use on the face in adults or for post-stroke spasticity of the upper limb in adults. Botulinum toxin units are not interchangeable from one product to another. Details of licensed indications and doses for individual products are available at the electronic Medicines Compendium. Where appropriate, informed consent should be obtained and documented. in children and young people in whom focal spasticity of the upper limb is:
- impeding fine motor function
- compromising care and hygiene
- causing pain
- impeding tolerance of other treatments, such as orthoses
- causing cosmetic concerns to the child or young person.
- impeding gross motor function
- compromising care and hygiene
- causing pain
- disturbing sleep
- impeding tolerance of other treatments, such as orthoses and use of equipment to support posture
- causing cosmetic concerns to the child or young person.
Specific considerations
Consider botulinum toxin type A treatment after an acquired non-progressive brain injury if rapid-onset spasticity is causing postural or functional difficulties.
Consider a trial of botulinum toxin type AAt the time of publication (July 2012), botulinum toxin type A did not have UK marketing authorisation for use in the treatment of focal dystonia associated with spasticity. However, it is used in the UK for the treatment of dystonia in children and young people with spasticity. Informed consent should be obtained and documented. treatment in children and young people with spasticity in whom focal dystonia is causing serious problems, such as postural or functional difficulties or pain.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeCautions and contraindications to botulinum toxin type A
Cautions and contraindications to botulinum toxin type A
Cautions and contraindications to botulinum toxin type A
Be cautious when considering the use of botulinum toxin type A treatment if:
- the child or young person has any of the following:
- a bleeding disorder, for example due to anti-coagulant therapy
- generalised spasticity
- fixed muscle contractures
- marked bony deformity or
- there are concerns about the child or young person's likelihood of engaging with the post-treatment adapted physical therapy programme (see other treatments with botulinum toxin type A) in this pathway.
Do not offer botulinum toxin type A treatment if the child or young person:
- has severe muscle weakness
- had a previous adverse reaction or allergy to botulinum toxin type A
- is receiving aminoglycoside treatment.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeWho should provide botulinum toxin type A treatment
Who should provide botulinum toxin type A treatment
Who should provide botulinum toxin type A treatment
Botulinum toxin type A treatment (including assessment and administration) should be provided by healthcare professionals within the network team who have expertise in child neurology and musculoskeletal anatomy.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeGiving information
Giving information
Giving information
When considering botulinum toxin type A treatment, give the child or young person and their parents or carers information about:
- the possible benefits and the likelihood of achieving the treatment goals
- what the treatment entails, including:
- the need for assessments before and after the treatment
- the need to inject the drug into the affected muscles
- the possible need for repeat injections
- the benefits, where necessary, of analgesia, sedation or general anaesthesia
- the need to use serial casting or an orthosis after the treatment in some cases
- possible important adverse effects (see also below).
Important adverse effects
Before starting treatment with botulinum toxin type A, tell children and young people and their parents or carers:
- to be aware of the following rare but serious complications of botulinum toxin type A treatment:
- swallowing difficulties
- breathing difficulties
- how to recognise signs suggesting these complications are present
- that these complications may occur at any time during the first week after the treatment and
- that if these complications occur the child or young person should return to hospital immediately.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodePerforming an assessment
Performing an assessment
Performing an assessment
When considering botulinum toxin type A treatment, perform a careful assessment of muscle tone, range of movement and motor function to:
- inform the decision as to whether treatment is appropriate
- provide a baseline against which the response to treatment can be measured.
A physiotherapist or an occupational therapist should be involved in the assessment.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeAdministering botulinum toxin type A
Administering botulinum toxin type A
Administering botulinum toxin type A
To avoid distress to the child or young person undergoing treatment with botulinum toxin type A, think about the need for:
- topical or systemic analgesia or anaesthesia
- sedation (see the NICE clinical guideline on sedation in children and young people).
Consider ultrasound or electrical muscle stimulation to guide the injection of botulinum toxin type A.
Consider injecting botulinum toxin type A into more than one muscle if this is appropriate to the treatment goal, but ensure that maximum dosages are not exceeded.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeOther treatments with botulinum toxin type A
Other treatments with botulinum toxin type A
Other treatments with botulinum toxin type A
Adapted physical therapy
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.
Orthoses
After treatment with botulinum toxin type A, consider an orthosis to:
- enhance stretching of the temporarily weakened muscle and
- enable the child or young person to practice functional skills.
If an orthosis is indicated after botulinum toxin type A, but limited passive range of movement would make this difficult, consider first using serial casting to stretch the muscle. To improve the child or young person's ability to tolerate the cast, and to improve muscle stretching, delay casting until 2–4 weeks after the botulinum toxin type A treatment.
Ensure that children and young people who receive treatment with botulinum toxin type A are offered timely access to orthotic services.
See orthoses for children and young people with spasticity in this pathway for more information.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeContinuing assessment
Continuing assessment
Continuing assessment
Perform an assessment of muscle tone, range of movement and motor function:
- 6–12 weeks after injections to assess the response
- 12–26 weeks after injections to inform decisions about further injections.
These assessments should preferably be performed by the same healthcare professionals who undertook the baseline assessment.
Consider repeat injections of botulinum toxin type A if:
- the response in relation to the child or young person's treatment goal was satisfactory, and the treatment effect has worn off
- new goals amenable to this treatment are identified.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeOther treatment options
View the 'Spasticity in children and young people overview' pathPaths 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: March 2013
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