Spasticity in children and young people with non-progressive brain disorders: summary of NICE guidance

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, and provides access to healthcare professionals experienced in the care of such people. 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 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.

[Both points based on the experience and opinion of the Guideline Development Group (GDG)]

Management programmes

• After 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 (a) developed and implemented in partnership with the individual and his or her parents or carers, tailored to the individual, and goal focused; and (b) takes into account the programme’s possible impact on the person and family. [Based on the experience and opinion of the GDG]

• Carefully assess the impact of spasticity in people with cognitive impairments: be aware that any benefit of treatments may be more difficult to assess in those with limited communication; and ensure that they have access to all appropriate services.

• Record the individualised goals and share these goals with the network team and, where appropriate, other people involved in their care.

• Offer relevant, and age and developmentally appropriate information, and educational materials; regular opportunities for discussion; and advice on individuals’ developmental potential and how treatment options may affect this. [Based on the experience and opinion of the GDG]

Monitoring

• Monitor for response to treatments; worsening of spasticity; secondary consequences of spasticity (for example, pain or contractures); and the need to change individualised goals. [Based on the experience and opinion of the GDG]

• Recognise clinical findings that are possible indicators of hip displacement (hip migration greater than 30%) (box 1).

• Offer hip radiography to assess for hip displacement if there are clinical concerns about possible hip displacement or at 24 months in children with bilateral cerebral palsy.

General principles

• Everyone referred to the network team should be promptly assessed by a physiotherapist and, where necessary, an occupational therapist. [Based on the experience and opinion of the GDG]

• Offer a programme of physical therapy (physiotherapy and/or occupational therapy) that is tailored to the individual’s needs and goals, such as enhancing skill development, function, and ability to participate in everyday activities; and preventing consequences such as pain or contractures.

• When deciding who should deliver physical therapy, take into account whether the person and parents or carers can deliver this therapy, what training they might need, and what their wishes are.

• Encourage individuals and their parents or carers to incorporate physical therapy into daily activities—for example, standing while brushing their teeth (to stretch leg muscles).

Specific strategies

• Consider including 24 hour postural management strategies (a) to prevent or delay the development of contractures or skeletal deformities in those at risk of developing these; and (b) to enable participation in activities appropriate to their stage of development.

• Consider task focused, “active use” therapy, such as “constraint induced movement therapy” (temporary restraint of an unaffected arm to encourage use of the other arm) followed by bimanual therapy (unrestrained use of both arms) to enhance manual skills.

• Consider muscle strengthening therapy when the assessment indicates that muscle weakness is contributing to loss of function or postural difficulties.

• Provision of an adapted physical therapy programme is essential after treatment with botulinum toxin type A, continuous pump administered intrathecal baclofen, orthopaedic surgery, or selective dorsal rhizotomy. [Based on the experience and opinion of the GDG]

General principles

• Consider orthoses based on individual needs and goals, such as improving posture, upper limb function, or walking efficiency; preventing or slowing hip migration or development of contractures; relieving discomfort, pain, or pressure points. [Based on low to high quality evidence from randomised controlled trials]

Specific uses

• Consider using elbow gaiters to maintain extension and improve function; rigid wrist orthoses to prevent contractures and limit flexion deformity; and dynamic orthoses to improve hand function (for example, a non-rigid thumb abduction splint to allow some movement with a “thumb in palm” deformity).

• Consider ankle-foot orthoses for those with serious functional limitations (level IV or V in the gross motor function classification system; box 2) to aid sitting, transfers between sitting and standing, and assisted standing.

• If an orthosis is used overnight, check that it is acceptable to the child or young person and does not cause injury or disturb sleep.

Continuing assessment

• The network team should review the use of orthoses at every contact with the person. Ensure the orthosis remains acceptable to the person and parents or carers; remains appropriate to treatment goals; is being used as advised; remains well fitting and in good repair; and is not causing adverse effects such as discomfort, pain, sleep disturbance, injury, or excessive muscle wasting.