4Physical therapy (physiotherapy and/or occupational therapy)

Publication Details

Introduction

Children with developmental and physical problems due to an upper motor neurone lesion (UMNL) usually receive physical therapy (that is, physiotherapy and/or occupational therapy). Physical therapy typically starts when developmental concerns first arise or at the time of injury, and it continues throughout childhood and into adult life. Physical therapists use a proactive and preventative approach centred on understanding the causes of the child or young person's current functional problems and how these impact upon their ability to develop and maintain skills and participate in home and school life, and in the wider community. As well as managing functional problems, physical therapists have a large educational and advisory role, helping children and young people and their families or carers understand their conditions and prognoses.

Spasticity usually forms one physical feature in a complex movement disorder caused as a result of a UMNL. Advances in the understanding of motor learning, neurodevelopment and how the child or young person responds to different situations and environmental changes support a functional approach to therapy, giving greater priority to maximising activity and participation in line with the domains of the World Health Organization's (WHO's) International Classification of Functioning, Disability and Health (ICF) Framework. The ICF Framework includes a version that is specific to children and young people (ICF children and youth version). The link between these domains is not clearly defined but it is recognised that negative and compensatory phenomena resulting from a UMNL (for example neurological weakness, poor movement control, abnormal sensation, health issues and reduced fitness and body condition) may have a more significant impact on a child or young person's ability to participate in everyday life than spasticity alone.

A child or young person's physical therapy needs, which are usually assessed on an individual basis, may be complex and multifaceted, changing throughout their lifetime as they develop physically and cognitively. The severity of the neurological damage, age demands and resulting functional problems determine physical therapy goals and interventions. Physical therapists recognise that a child or young person's cognitive ability, personality, health and fitness, family situation, comorbidities, environment and social context have a significant impact on activity and participation. Many physical therapy interventions have a wider impact and require responsibility to be shared between different types of healthcare professionals, the child or young person's family or carers, and social care and education services.

Physical therapists recognise that movement difficulties in children and young people are complicated by growth and the effects of gravity, which can cause increasing secondary compensation effects of muscle and bony deformity. These can result in pain and limitation of activity causing reduced quality of life and increased family stress, emotional difficulties and care needs. Physical therapists are vital in recognising and managing these limitations, referring on to professional colleagues for advice and further management where necessary. Physical therapy is used in conjunction with other interventions, such as oral drugs, botulinum toxin type A (BoNT-A), continuous pump-administered intrathecal baclofen (CITB), orthopaedic surgery and selective dorsal rhizotomy (SDR), to improve effectiveness and aid rehabilitation.

Physical therapists have a wide range of skills and treatment options, and although there are similarities between approaches, clinical practice varies depending on the therapist's personal knowledge and skills, the model of service delivery favoured locally, and the needs assessment of the child or young person. The amount and type of physical therapy received can vary widely.

Evidence for the effectiveness of physical therapy interventions and their benefits in terms of treating movement problems are considered in this chapter. Physical therapy (and the use of orthoses) is not undertaken primarily to reduce spasticity. Rather, the specific interventions that comprise physical therapy aim to maintain function, body alignment and so on, and to prevent or delay secondary consequences of spasticity. The scope of the guideline is limited in that it specifically excludes holistic management of cerebral palsy and other non-progressive brain disorders, and thus it was necessary to prioritise issues to be considered as part of the guideline review in relation to physical therapy. The GDG's view was that most children and young people with spasticity would receive physical therapy as a baseline intervention, and they might or might not receive other interventions to manage muscle tone. The GDG prioritised consideration of physical therapy interventions that were most likely to be used in children and young people with spasticity. The group concluded that active-use therapy and other techniques that contribute to the objectives of strengthening, stretching and postural management should be considered in the guideline review. Thus the review conducted for the guideline focused specifically on the following physical therapy interventions:

  • Task-focused active-use therapy (active-use therapy or constraint-induced movement therapy [CIMT; temporary restraint of an unaffected arm to encourage use of the other arm]) and bimanual therapy (unrestrained use of both arms). Active-use therapy focuses on movement achieved by the child or young person themselves, in contrast to passive movements achieved by a third party (such as a healthcare professional or a parent or carer). The term task-focused is used to imply that the activity undertaken is goal-oriented.
  • Strengthening interventions (progressive resistive exercise, rebound therapy and treadmill training).
  • Stretching (casting, including serial casting, and passive stretching).
  • Postural management (24-hour postural management, functional sitting position, seating solutions including moulded seats, knee blocks, sleep systems and standing frames).

The GDG sought evidence from studies that reported clearly defined techniques relevant to the prioritised interventions and were conducted using reasonably large samples of children and young people. Where the interventions evaluated in a particular study were not reported clearly or the number of children and young people who participated was less than 10 the study was excluded.

No related NICE guidance was identified for this review question.

Review question

What is the effectiveness of physical therapy (physiotherapy and/or occupational therapy) interventions in children with spasticity with or without other motor disorders (dystonia, muscle weakness and choreoathetosis) caused by a non-progressive brain disorder?

Description of included studies

Twelve studies reported in 14 publications were identified for inclusion for this review question (Aarts 2010; Aarts 2011; Dodd 2003; Dodd 2004; Fowler 2010; Katz-Leurer 2009; Law 2011; Lee 2008; Liao 2007; McNee 2007; Newman 2007; Novak 2009; Sakzewski 2011; Unger 2006). The studies addressed five comparisons.

Active use therapy versus no active use therapy in children and young people with unilateral or bilateral spasticity was evaluated in three parallel randomised controlled trials (RCTs) reported in four publications (Aarts 2010; Aarts 2011; Katz-Leurer 2009; Novak 2009). In the first study (Aarts 2010; Aarts 2011), the participants were aged 2.5–8 years and all of them had unilateral spasticity: the intervention was described as CIMT in which each child was encouraged to actively use their affected arm during treatment while use of their unaffected arm was limited by use of a sling. In the second study (Katz-Leurer 2009) the participants were aged 7–13 years: these children and young people had unilateral or bilateral spasticity and physical therapy was based on repetition of exercises to facilitate performance of goals or daily activities. In the third study (Novak 2009) the participants were aged 3.5–7 years: these children had unilateral or bilateral spasticity and physical therapy was based on repetition of exercises to facilitate performance of goals or daily activities in an intervention termed an Occupational Therapy Home Programme (OTHP).

Comparisons between different forms of active use therapy in children and young people with cerebral palsy were evaluated in one matched-pairs RCT (Sakzewski 2011) and one cluster RCT (Law 2011). In the first study (Sakzewski 2011) the participants were aged 5–16 years and they all had hemiplegia. The study compared the effectiveness of CIMT and bimanual therapy. The CIMT intervention involved the use of the child or young person's affected arm while use of the unaffected arm was limited by wearing a tailor-made glove designed to prevent grasp but allowing the hand to be used for support. In the second study (Law 2011) the participants were children aged 12 months to 5 years 11 months with cerebral palsy who were at Gross Motor Function Classification System (GMFCS) level I, II, III, IV or V. Physical therapy was based on either a child- or context-focused intervention to improve performance of functional tasks and mobility. The duration of each intervention was 6 months, and both treatment groups received 18–24 sessions of physical therapy. Assessments were conducted at baseline, 6 months and 9 months, and the children returned to their prestudy approaches to physical therapy between the 6- and 9-month assessments. The child-focused intervention identified impairments underlying functional limitations and physical therapy was provided to remediate those impairments. The context-focused intervention did not include remediation of impairments: instead, it involved identification of barriers in the child's environment (for example their home or preschool) or strategies used to achieve individualised tasks or goals, and modification of the environment and/or strategies to overcome those barriers. Additionally, the two interventions differed in terms of who delivered the treatment: in the child-focused approach the intervention was delivered collectively by a group of physiotherapists and occupational therapists, whereas in the context-focused approach each child was assigned a particular physiotherapist or occupational therapist who delivered the intervention. In both interventions, the five most frequently used approaches to physical therapy included practice of functional mobility activities. In the child-focused intervention the remaining four most frequently used approaches to physical therapy were: practice of upper extremity motor activities; training in components of movement; practice of stationary gross motor skills; and stretching. In the context-focused intervention the remaining four most frequently used approaches were: modifying the physical characteristics of the child's environment, materials or tools; changing a task instruction; adding adaptive equipment; and providing education or instruction to the child's family.

Strengthening versus usual care not including strengthening in children and young people with unilateral or bilateral spasticity was evaluated in five parallel RCTs reported in six publications (Dodd 2003; Dodd 2004; Fowler 2010; Lee 2008; Liao 2007; Unger 2006). In all five studies the intervention was a strengthening programme consisting of progressive resistive exercises. No evidence was identified for inclusion in relation to other strengthening interventions, such as treadmill training or rebound therapy. The participants in the two publications that related to the first study (Dodd 2003; Dodd 2004) were aged 8–18 years and 8–16 years, respectively; those in the second study (Fowler 2010) were aged 7–18 years; those in the third study (Lee 2008) were aged 4–12 years; those in the fourth study (Liao 2007) were aged 5–12 years; and those in the fifth study (Unger 2006) were aged 13–18 years).

Serial casting versus usual care not including serial casting in children aged 6 years 1 month to 10 years 3 months with unilateral or bilateral spasticity was evaluated in one cross-over RCT (McNee 2007).

Early casting after BoNT versus delayed casting after BoNT in children aged 3.5–7.5 years with unilateral or bilateral spasticity was evaluated in one parallel RCT (Newman 2007).

Evidence profiles

Active use therapy versus no active use therapy

None of the studies identified for inclusion reported reduction of spasticity.

One study (Aarts 2011) reported range of movement in the upper limb. The outcomes reported included active range of movement (AROM), in which movement is achieved by the child or young person themselves, and passive range of movement (PROM), in which movement is achieved by the actions of a third party.

Table 4.1. Evidence profile for active use therapy compared with no active use therapy in children with unilateral spasticity; joint movement assessment.

Table 4.1

Evidence profile for active use therapy compared with no active use therapy in children with unilateral spasticity; joint movement assessment.

Three studies reported outcomes relevant to optimisation of function and movement (Aarts 2010; Katz-Leurer 2009; Novak 2009). The outcomes reported included Assisting Hand Assessment (AHA), Goal Attainment Scaling (GAS; including GAS T-scores), Canadian Occupational Performance Measure (COPM; including domains relating to performance (COPM-P) and satisfaction (COPM-S).

Table 4.2. Evidence profile for active use therapy compared with no active use therapy in children with unilateral or bilateral spasticity; functioning assessment.

Table 4.2

Evidence profile for active use therapy compared with no active use therapy in children with unilateral or bilateral spasticity; functioning assessment.

Two studies reported outcomes relevant to acceptability and tolerability (Aarts 2010; Novak 2009).

Table 4.3. Evidence profile for active use therapy compared with no active use therapy in children with unilateral or bilateral spasticity; treatment acceptability assessment.

Table 4.3

Evidence profile for active use therapy compared with no active use therapy in children with unilateral or bilateral spasticity; treatment acceptability assessment.

None of the studies reported outcomes relevant to pain (reduction of pain) or quality of life.

One study investigated adverse effects (Novak 2009). Parents were asked to report adverse events to the physical therapist by telephone or face-to-face.

Table 4.4. Evidence profile for occupational therapy home programme for 4 or 8 weeks compared with no occupational therapy home programme in children with unilateral or bilateral spasticity; adverse events.

Table 4.4

Evidence profile for occupational therapy home programme for 4 or 8 weeks compared with no occupational therapy home programme in children with unilateral or bilateral spasticity; adverse events.

Comparison between different forms of active use therapy

Neither of the studies identified for inclusion reported reduction of spasticity.

Both studies reported outcomes relevant to optimisation of function and movement (Law 2011; Sakzewski 2011). The outcomes reported included the Melbourne Assessment of Unilateral Upper Limb Function (MAUULF) and the Pediatric Evaluation of Disability Inventory (PEDI).

Table 4.5. Evidence profile for constraint-induced movement therapy versus bimanual therapy in children and young people with spasticity; functioning assessment.

Table 4.5

Evidence profile for constraint-induced movement therapy versus bimanual therapy in children and young people with spasticity; functioning assessment.

Table 4.6. Evidence profile for child-focused intervention compared with context-focused intervention in children with spasticity; joint movement assessment.

Table 4.6

Evidence profile for child-focused intervention compared with context-focused intervention in children with spasticity; joint movement assessment.

Table 4.7. Evidence profile for child-focused intervention compared with context-focused intervention in children with spasticity; functioning assessment.

Table 4.7

Evidence profile for child-focused intervention compared with context-focused intervention in children with spasticity; functioning assessment.

Neither study reported outcomes relevant to acceptability and tolerability, pain (reduction of pain), quality of life or adverse effects.

Strengthening versus usual care not including strengthening

None of the studies identified for inclusion reported reduction of spasticity.

All five RCTs reported outcomes relevant to optimisation of function and movement (Dodd 2003; Fowler 2010; Lee 2008; Liao 2007; Unger 2006).

Table 4.8. Evidence profile for strengthening programmes (progressive resistive exercises) compared with usual care in children with unilateral or bilateral spasticity; functioning assessment.

Table 4.8

Evidence profile for strengthening programmes (progressive resistive exercises) compared with usual care in children with unilateral or bilateral spasticity; functioning assessment.

None of the studies reported pain (reduction of pain).

Two of the studies reported outcomes relevant to quality of life (Dodd 2004; Unger 2006).

Table 4.9. Evidence profile for strengthening programmes (progressive resistive exercises) compared with usual care in children with unilateral or bilateral spasticity; quality of life.

Table 4.9

Evidence profile for strengthening programmes (progressive resistive exercises) compared with usual care in children with unilateral or bilateral spasticity; quality of life.

Two of the studies investigated adverse effects (Dodd 2003; Fowler 2010).

Table 4.10. Evidence profile for strengthening programmes (progressive resistive exercises) compared with usual care in children with unilateral or bilateral spasticity; adverse events.

Table 4.10

Evidence profile for strengthening programmes (progressive resistive exercises) compared with usual care in children with unilateral or bilateral spasticity; adverse events.

None of the studies reported outcomes related to acceptability and tolerability.

Serial casting versus usual care not including serial casting

The only study identified for inclusion (McNee 2007) did not report reduction of spasticity but did report optimisation of movement at the ankle joint.

Table 4.11. Evidence profile for serial casting compared with usual care in children with unilateral or bilateral spasticity; joint movement assessment.

Table 4.11

Evidence profile for serial casting compared with usual care in children with unilateral or bilateral spasticity; joint movement assessment.

The study also reported optimisation of function in terms of walking speed.

Table 4.12. Evidence profile for serial casting compared with usual care in children with unilateral or bilateral spasticity; functioning assessment.

Table 4.12

Evidence profile for serial casting compared with usual care in children with unilateral or bilateral spasticity; functioning assessment.

The study did not report pain (reduction of pain), quality of life, adverse effects or acceptability and tolerability.

Early casting after botulinum toxin versus delayed casting

The only study identified for inclusion (Newman 2007) reported outcomes relevant to reduction of spasticity and optimisation of movement of the joint. The outcomes reported included Modified Tardieu Scale (MTS) scores.

Table 4.13. Evidence profile for early casting after botulinum toxin compared with delayed casting after botulinum toxin in children with unilateral or bilateral spasticity; tone and joint movement assessment.

Table 4.13

Evidence profile for early casting after botulinum toxin compared with delayed casting after botulinum toxin in children with unilateral or bilateral spasticity; tone and joint movement assessment.

The study did not report optimisation of function, quality of life or pain (reduction of pain).

The study reported adverse effects.

Table 4.14. Evidence profile for early casting after botulinum toxin compared with delayed casting after botulinum toxin in children with unilateral or bilateral spasticity; adverse events.

Table 4.14

Evidence profile for early casting after botulinum toxin compared with delayed casting after botulinum toxin in children with unilateral or bilateral spasticity; adverse events.

The study did not report outcomes related to acceptability and tolerability.

Evidence statement

Active use therapy versus no active use therapy

No evidence was identified that related to reduction of spasticity.

With regard to optimisation of range of movement, one RCT provided evidence of greater increases (compared with baseline) in AROM and PROM wrist extension at 9 and 17 weeks after children received 6 weeks of modified CIMT and 2 weeks of bimanual training compared with children who received 8 weeks of usual care, although these improvements were not statistically significant. (MODERATE) The same RCT reported evidence of greater increases (compared with baseline) in AROM elbow extension at 9 or 17 weeks in children who received 6 weeks of modified CIMT and 2 weeks of bimanual training compared with those who received 8 weeks of usual care, although these improvements were not statistically significant. (MODERATE) Greater improvements in PROM elbow extension in children who received 6 weeks of modified CIMT and 2 weeks of bimanual training compared with children who received 8 weeks of usual care were not statistically significantly different at 9 weeks compared with baseline (MODERATE), but were statistically significant at 17 weeks compared with baseline. (HIGH)

Considering optimisation of function and movement, one RCT provided evidence of a statistically significantly greater improvement (compared with baseline) in hand function (AHA scores) at 9 weeks and 17 weeks in children who received 6 weeks of modified CIMT and 2 weeks of bimanual training compared with children who received 8 weeks of usual care. (MODERATE) The same RCT provided evidence of a statistically significantly greater improvement (compared with baseline) in GAS scores at 9 weeks and 17 weeks after children received 6 weeks of modified CIMT and 2 weeks of bimanual training compared with children who received 8 weeks of usual care. (HIGH)

A further RCT provided evidence of statistically significant improvements in goal attainment (GAS T-scores) and performance (COPM-P scores) at 8 weeks in children who received a 4-week OTHP and children who received an 8-week OTHP compared with children who did not receive the programme. (HIGH) However, there were no statistically significant differences in GAS T-scores or COPM-P scores between the children who received the 4-week programme and those who received the 8-week programme. (MODERATE)

One RCT provided evidence of statistically significantly greater improvements (compared with baseline) in performance (COPM-P scores) at 9 weeks and 17 weeks after children received 6 weeks of modified CIMT and 2 weeks of bimanual training compared with children who received 8 weeks of usual care. (HIGH)

One RCT reported that walking speed (10-minute walking test) was higher (compared with baseline) at 6 weeks after children and young people received a 6-week home-based task-oriented exercise programme (including sit-to-stand and step-up exercises) compared with those who did not receive the programme, although this difference was not statistically significant. (LOW)

With regard to acceptability and tolerability, one RCT provided evidence of statistically significant improvements in satisfaction (COPM-S scores) at 8 weeks in children who received a 4-week OTHP and those who received an 8-week OTHP compared with children who did not receive the programme. (HIGH) However, no statistically significant differences in satisfaction (COPM-S scores) between the children who received the 4-week programme and those who received the 8-week programme were reported. (MODERATE)

A further RCT provided evidence of statistically significant improvements in satisfaction (COPM-S scores) at 9 weeks and 17 weeks after children received 6 weeks of modified CIMT and 2 weeks of bimanual training compared with children who received 8 weeks of usual care. (HIGH)

No evidence was identified that related to pain (reduction of pain) or quality of life.

With regard to adverse effects, one RCT provided evidence that no adverse effects were observed in children who received a 4-week or 8-week OTHP or in children who did not receive the programme. (LOW)

Comparison between different forms of active use therapy

No evidence was identified that related to reduction of spasticity.

With regard to optimisation of function one RCT provided evidence of an improvement (compared with baseline) in AHA scores at 3 weeks, but a reduction (compared with baseline) at 26 weeks in children and young people with hemiplegia who received CIMT compared with those who received bimanual training. These findings were not statistically significant. (MODERATE) The same RCT provided evidence of an improvement (compared with baseline) in MAUULF scores at 3 weeks in children with hemiplegia who received CIMT compared with those who received bimanual training. This finding was not statistically significant. (MODERATE) At 26 weeks there was evidence of a statistically significant improvement (compared with baseline) in MAUULF scores in children and young people with hemiplegia who received CIMT compared with those who received bimanual training. (MODERATE)

Considering optimisation of range of movement, one cluster RCT provided evidence of a reduction in both right and left hip abduction at 6 months and an improvement at 9 months (final score analysis) in children who received child-focused physical therapy compared with those who received context-focused physical therapy. These findings were not statistically significant. (LOW) The same cluster RCT reported that there was an improvement in both right and left hip extension at 6 months (final score analysis) in children who received the child-focused intervention compared with those who received the context-focused intervention. At 9 months (final score analysis), there was improvement in hip extension in the right leg, but a reduction in the left leg in children who received the child-focused intervention compared with those who received the context-focused intervention. These findings were not statistically significant. (LOW) The same cluster RCT reported that there was an improvement in both right and left popliteal angle at 6 months (final score analysis) in children who received the child-focused intervention compared with those who received the context-focused intervention. At 9 months (final score analysis), there was a reduction in the right popliteal angle range of movement, but an improvement in the left leg in children who received the child-focused intervention compared with those who received the context-focused intervention. These findings were not statistically significant. (LOW) The same cluster RCT provided evidence of a reduction in both right and left ankle dorsiflexion at 6 months and an improvement at 9 months (final score analysis) in children who received the child-focused intervention compared with those who received the context-focused intervention. These findings were not statistically significant. (LOW)

With regard to optimisation of function the same cluster RCT provided evidence of an improvement in PEDI self-care and mobility functional skills scale scores at both 6 and 9 months (final score analysis) in children who received the child-focused intervention compared with those who received the context-focused intervention. These findings were not statistically significant. (LOW)

The same cluster RCT provided evidence of a reduction in PEDI self-care caregiver assistance scale scores at 6 months but an improvement at 9 months (final score analysis) in children who received the child-focused intervention compared with those who received the context-focused intervention. These findings were not statistically significant. (LOW) PEDI mobility caregiver assistance scale scores were improved at both 6 and 9 months (final score analysis) in children who received the child-focused intervention compared with those who received the context-focused intervention. These findings were not statistically significant. (LOW) However, the study authors reported an unquantified statistically significantly greater improvement (compared with baseline) in PEDI self-care functional skills scale scores at 9 months in children who received the child-focused intervention compared with those who received the context-focused intervention.

The same cluster RCT provided evidence of an improvement in GMFM-66 scores at 6 and 9 months (final score analysis) in children who received the child-focused intervention compared with those who received the context-focused intervention. These findings were not statistically significant. (LOW)

No evidence was identified that related to acceptability and tolerability, pain (reduction of pain), quality of life or adverse effects.

Strengthening versus usual care not including strengthening

No evidence was identified that related to reduction of spasticity.

With regard to optimisation of function and movement, mean change scores from baseline were calculated by the NCC-WCH technical team from data reported in individual publications as baseline values between the groups were often different and so final score comparisons would not be representative estimates of actual treatment effects. Standard errors (SEs) or SDs were not reported in the included studies for these mean change estimates. Hence the following findings provide an estimate of the direction of the treatment effect but the statistical significance of the comparisons of mean change scores could not be determined.

One RCT reported improvement (compared with baseline) in function (GMFM 88 goal dimension) at 6 weeks in children and young people who received a strengthening programme for 6 weeks compared with reduced function in those who received their regular physical therapy instead of the programme. The statistical significance of this finding could not be determined. (LOW)

Two RCTs provided evidence of lower scores (compared with baseline) in function assessments (GMFM-D, standing) at 6 weeks in children and young people who received a strengthening programme compared with those who received conventional therapy, although improvements were reported in both groups. The participants received a 5-week strengthening programme in one study and a 6-week strengthening programme in the other. The statistical significance of these findings could not be determined. (MODERATE) The second RCT also provided evidence of lower scores (compared with baseline) in function assessments (GMFM-D) at 18 weeks in children and young people who received a 6-week strengthening programme compared with those who received usual care instead of the programme, although improvements were reported in both groups. The statistical significance of this finding could not be determined. (MODERATE)

Two RCTs provided evidence of a greater improvement (compared with baseline) in function (GMFM-E, walking, running and jumping) at 6 weeks in children and young people who received a strengthening programme compared with those who received conventional physical therapy. (MODERATE) The participants received a 5-week strengthening programme in one study and a 6-week strengthening programme in the other. The statistical significance of the findings could not be determined. (MODERATE) The second RCT also provided evidence of an improvement (compared with baseline) in function (GMFM-E) at 18 weeks in children and young people who received a 6-week strengthening programme compared with reduced function in those who received usual care instead of the programme. The statistical significance of this finding could not be determined. (MODERATE)

A further RCT reported a greater improvement (compared with baseline) in function (GMFM-66 total score) at 12 weeks in children and young people who received a 12-week strengthening programme compared with those who did not receive the programme, although this finding was reported as not being statistically significant. (MODERATE)

One RCT reported no difference (compared with baseline) in function (GMFM total score) at 6 weeks in children and young people who received a strengthening programme for 5 weeks compared with those who received conventional physical therapy for 5 weeks. The statistical significance of this finding could not be determined. (MODERATE) Another RCT reported a greater improvement (compared with baseline) in function (GMFM total score) at 6 weeks and at 18 weeks in children and young people who received a strengthening programme for 6 weeks compared with those who received conventional physical therapy for 6 weeks. The statistical significance of these findings could not be determined. (MODERATE)

Five RCTs reported estimates of walking speed. Two RCTs provided evidence of improvement (compared with baseline) in walking speed at 6 weeks in children and young people who received a strengthening programme for 5 weeks (LOW) and 6 weeks (MODERATE) compared with a reduction in walking speed in those who received their usual physical therapy only. The statistical significance of these findings could not be determined.

One further RCT provided evidence of reduced walking speed (compared with baseline) at 6 weeks in children and young people who received a strengthening programme for 6 weeks compared with those who received their usual physical therapy only. Although improvements were reported in both groups, the statistical significance of this finding could not be determined. (MODERATE)

Another RCT provided evidence of a greater improvement (compared with baseline) in walking speed (three-dimensional gait analysis) at 8 weeks in children and young people who received a strengthening programme for 8 weeks compared with those who did not receive the programme. The statistical significance of this finding could not be determined. (LOW)

Another RCT provided evidence of an improvement in walking speed (30-second walk test) at 12 weeks after children and young people received a 12-week strengthening programme compared with those who did not receive the programme. (MODERATE)

One RCT provided evidence of a greater improvement (compared with baseline) in walking speed (10-minute walk test) at 18 weeks after children and young people received a 6-week strengthening programme compared with those who received usual care instead of the programme. The statistical significance of this finding could not be determined. (MODERATE) The same RCT provided evidence of an improvement in a timed stair test at 6 and 18 weeks after children and young people started a 6-week strengthening programme compared with those who received usual care instead of the programme. The statistical significance of this finding could not be determined. (MODERATE)

No evidence was identified that related to pain (reduction of pain).

With regard to quality of life, one RCT provided evidence of a lower assessment score (compared with baseline) in self-perception of functional competence at 8 weeks compared with those who did not receive the programme. The statistical significance of this finding could not be determined although improvements were reported in both groups. The same RCT reported improvement (compared with baseline) in self-perception of body image at 8 weeks in children and young people who received a strengthening programme for 8 weeks compared with a reduction in scores in those who did not receive the programme. The statistical significance of these findings could not be determined. (LOW) One RCT provided evidence of a greater improvement (compared with baseline) in self-perception (global self-worth) at 18 weeks after children and young people received a 6-week strengthening programme compared with those who received usual care instead of the programme. (LOW)

With regard to adverse effects, one RCT reported that 27.3% of children who received a 6-week strengthening programme experienced pressure on the shoulder, mild foot discomfort or mild ankle discomfort. No episodes of these adverse events were reported in the group that did not receive the intervention. (LOW) A further RCT reported that 58.6% of children and young people who received a 12-week strengthening programme complained of mild pain, soreness or muscle cramping, 20.6% were observed falling and 3.4% experienced a skin rash related to the equipment used. No episodes of these adverse events were reported in the group that did not receive the intervention. (LOW)

No evidence was identified in relation to acceptability and tolerability.

Serial casting versus usual care not including serial casting

No evidence was identified that related to reduction of spasticity.

With regard to optimisation of movement, one RCT provided evidence of a statistically significantly greater improvement (compared with baseline) in PROM ankle dorsiflexion (knee flexed) at 12 weeks after children received serial casting compared with when the same children did not receive casting. (MODERATE) The RCT also provided evidence that assessments (compared with baseline) in PROM ankle dorsiflexion (knee extended) at 12 weeks were higher after the children received serial casting compared with when they did not receive casting, although this improvement was not statistically significant. (LOW)

Considering optimisation of function, the RCT reported reduced walking speed (tridimensional gait analysis) at 12 weeks (compared with baseline) after the children received serial casting compared with increased walking speed when they did not receive casting, although this improvement was not statistically significant. (LOW)

No evidence was identified that related to pain (reduction of pain), quality of life, adverse effects, or acceptability and tolerability.

Early casting after botulinum toxin versus delayed casting

With regard to reduction of spasticity, one RCT provided evidence of a statistically significant reduction (compared with baseline) in spasticity (MTS score) at 3 and 6 months in children who received casting 4 weeks after BoNT treatment compared with those children who received casting immediately after BoNT treatment for the treatment of spastic equinus. (LOW) The same RCT reported higher assessment scores (compared with baseline) in PROM at the ankle after 3 months, but lower assessment scores (compared with baseline) at 6 months in children who received casting immediately after BoNT treatment compared with those who received casting 4 weeks after BoNT treatment, although improvements were reported in both groups. These findings were not statistically significant. (LOW)

No evidence was identified in relation to optimisation of function, pain (reduction of pain) or quality of life.

With regard to adverse effects, the RCT provided evidence that 50% of children who received casting immediately after BoNT treatment required a change of cast within 48 hours of having their first cast applied because of pain. None of the children who received casting 4 weeks after BoNT treatment required a change of cast for this reason. (LOW)

No evidence was identified that related to acceptability and tolerability.

Other comparisons of interest

The GDG also prioritised evaluation of the following interventions and comparators, but no studies were identified for inclusion:

  • casting plus BoNT versus BoNT only
  • postural management versus usual care not including postural management
  • passive stretching versus usual care not including passive stretching
  • neurodevelopmental treatment (NDT).

Health economics

No economic evaluations of physical therapy were identified in the literature search conducted for the guideline. There is very limited good quality evidence of clinical effectiveness for physical therapy. After much discussion, the GDG came to the view that it would not be possible to quantify the mean benefits of physical therapy to inform a cost effectiveness analysis. A simple cost description showed 1 hour per week of physical therapy would cost approximately £2,000 per year (see Chapter 11). The costs would need to be considered alongside the benefits to determine value for money and this would require comparative long-term data which are not currently available.

Evidence to recommendations

Relative value of outcomes

Although physical therapy might not alter spasticity, the GDG considered that this should be assessed and that the Ashworth and Tardieu scales and the Modified Ashworth Scale (MAS) and the MTS were appropriate outcome measures because they are widely used in research. Optimisation of movement was prioritised as this is a prime aim of physical therapy. AROM was considered a useful indicator of selective muscle control and hence a potentially important outcome. PROM was also considered important because muscle tightness may be improved by physical therapy. Walking speed and distance (endurance) were also considered to be clinically important outcome measures because improvement would increase the ability to participate in activities and join in with peers. Optimisation of function is often the cornerstone of physical therapy programmes and was, therefore, considered to be an important outcome.

The GDG prioritised commonly employed measures of function including the AHA, the GAS, the PEDI and the GMFM (66- or 88-item versions). The GDG recognised, however, that some of these outcome measures may not be sensitive enough to detect clinically important improvements in function. Measurements of quality of life were also considered important as outcomes of physical therapy and the GDG prioritised measures such as COPM-S and COPM-P scales (both subjective scales), the Child Health Questionnaire (CHQ) and the Pediatric quality of life inventory (PedsQL) as useful measures. Pain was regarded as an important outcome, in that the GDG consensus was that physical therapy might have a role in the management of painful muscle spasms and chronic pain more generally, and the GDG agreed that reported outcomes based on objective pain scales should be included. Certain adverse effects might be anticipated with physical therapy, including pain and discomfort. Injury might also be important, and such effects were included as important outcomes. Finally, acceptability and tolerability of physical therapy interventions were considered together by the GDG to be a key outcome.

Quality of evidence and trade-off between clinical benefits and harms

The evidence sought for the guideline review related to four key areas of physical therapy: task-focused active-use therapy, muscle strengthening, passive stretching and postural management.

Task-focused active-use therapy

Task-focused active-use therapy programmes have been used widely with the intention of improving functional activities and enhancing participation in normal activities to the best of the individual's ability. These approaches have been recommended in part based on ‘motor learning’ principles. Programmes typically consist of functional activities carried out with instruction and demonstration followed by feedback. Repetition and practice are considered to be critically important. Functional activities include daily maintenance activities, such as standing to perform a task (for example brushing one's teeth).

Moderate- to high-quality evidence from RCTs supported the effectiveness of active-use therapy consisting of CIMT followed by bimanual training in improving upper limb function. There was evidence suggesting improved hand function and GAS scores, and of improved performance scores and reported satisfaction scores up to 17 weeks after 4–8 week blocks of such therapy. The GDG made a specific recommendation based on these studies.

The GDG considered that active-use therapy was likely to be particularly effective in young children because before 8 years, children with spasticity are still developing their mobility and hand-skill strategies. However, the group did not think it would be helpful to introduce specific age limits into the recommendations because development in this population is highly individualised. Instead, the group considered that decision-making should be determined by clinical judgement based on clinical indications and individual needs. The GDG considered that active-use therapy provided in the context of the child's normal activities, for instance at a nursery or at home, was more likely to prove effective than those developed in a more abstract setting because, in the GDG members' experience, it would increase the likelihood of the child engaging with the treatment and opportunities to use the treatment would arise more often as a result. The group did, however, acknowledge that the practicalities of providing therapy in the context of the child's normal activities would need to be considered at a local level. Seeing children at home or nursery rather than in a clinic may mean a physical therapist will see fewer children because they need to spend more time travelling. This trade-off is reflected in the wording of the recommendation.

One RCT provided moderate- to high-quality evidence for significant improvements in goal attainment using an individualised occupational therapy programme delivered at the child or young person's home (OTHP) over 4 or 8 weeks. The programme interventions varied greatly depending on individual goals, and they included specific goal-directed training, handwriting task training, recreation and sports therapy, play therapy and CIMT. In addition to these active-use interventions, other strategies employed included parental education and positive behavioural support, and the use of adaptive equipment, strength training and orthoses. Using these diverse interventions there were improvements for both the 4- and 8-week groups in relation to GAS, participation (COPM-P) and satisfaction (COPM-S). There was, however, no significant difference between the different durations of the programme (4 or 8 weeks). The GDG considered that this study highlighted the success that could be achieved with appropriately focused therapy strategies, and especially active-use therapy, in achieving specific treatment goals. The group also considered that this study highlighted the importance of individualised physical therapy and this was reflected in the recommendations.

Another RCT examined the effect of a 6-week home-based course of active-use therapy including a programme of motor and balance tasks for children and young people with spasticity due to cerebral palsy or a traumatic brain injury. However, there was only one relevant outcome reported and this was that there was no evidence that this approach improved walking speed.

A further RCT compared the effectiveness of child- versus context-focused approaches to physical therapy. The child- and context-focused interventions differed in terms of content and who provided the physical therapy, and the GDG recognised the need for further research in this area, particularly among children and young people who are at GMFCS level I, II or III.

Muscle strengthening

The studies of physical therapy aimed at muscle strengthening all focused on progressive resistive training. None of these found evidence of improved function. One reported evidence of improved self-perception (a measure of quality of life). The evidence was largely of poor quality for the outcomes examined and the sample sizes were often small. The descriptions of the ‘usual therapy’ with which the strengthening programmes were compared were unclear. Despite this relative lack of evidence for clinically important outcomes, the GDG members' consensus, based on their recognition of the importance of muscle weakness in some individuals and their experience with such physical therapy, was that muscle strengthening could be a useful goal in appropriately selected children and young people. In those with spasticity, muscle weakness can be an important contributor to motor difficulties and impaired function. It may be difficult to differentiate weakness of neurological origin from that due to under-use, and in a given individual it may not always be clear at the outset to what degree strengthening can be achieved through physical therapy. Nevertheless, the GDG consensus was that improved strength and the possibility of an associated overall improvement in physical fitness may be important as goals for some children and young people. This might be especially true for those who otherwise have a limited opportunity to participate in exercise programmes.

The GDG therefore recommended that consideration be given to the use of muscle strengthening therapy where, based on the assessment, it is thought likely that muscle weakness is contributing to loss of function or postural difficulties. The GDG recommended that strengthening therapies be directed towards specific goals and should incorporate progressive repetitive exercises against resistance.

Passive stretching

Passive stretching, whether manually through the use of casts or otherwise, has been a part of physical therapy for many years. Current physical therapy programmes often include brief, manual passive stretching intended to help maintain soft tissue length and hence prevent deformity. The GDG noted that no evidence was found that related to this approach to physical therapy. The group's consensus was that any effect derived from this approach might be expected to be short-lived and so they did not recommend it.

Serial casting is often used with the intention of increasing the range of joint movement by lengthening soft tissues. Such therapy is often employed in conjunction with other interventions (for example to improve a child or young person's ability to tolerate an orthosis). One study reported that serial casting improved PROM (ankle dorsiflexion). In terms of movement and function outcomes the evidence did not show that serial casting improved walking speed or measures of function or quality of life. The GDG nevertheless considered that sustained low-load stretching using positioning with equipment and/or orthoses or serial casting was more likely to be effective in maintaining soft tissue length and preventing or limiting deformity than brief, manual passive stretching. This was directly relevant to the group's considerations in relation to postural management (see below).

Although there was a lack of comparative studies on serial casting employed after BoNT treatment (BoNT with or without subsequent serial casting), it is common practice to employ serial casting in this setting with the aim of enhancing range of movement following reduction in muscle tone. The GDG members agreed, based on their experience and the underlying principles of this approach, that this was a worthwhile treatment strategy. There is variation in practice regarding the interval from BoNT treatment to the first cast application. The GDG considered this a significant issue, as injection and casting require the expertise of different services and hence there could be resource implications. The GDG noted the evidence that starting casting about 4 weeks after BoNT treatment did not alter the therapeutic effect, but it was much better tolerated than immediate casting. Problems of tolerance arose in 50% of the children and young people who began cast treatment immediately, and these problems required removal and replacement of casts. While the study population in this trial was small, the GDG was persuaded that delayed casting was preferable and made a recommendation accordingly.

Postural management

Postural management is a widely accepted aspect of physical therapy employed to improve certain functional abilities and to slow or prevent the development of musculoskeletal deformity. Despite this, the GDG noted that no studies were identified that examined the effectiveness of postural management programmes. Nevertheless, the GDG consensus was that postural management based on appropriate individual goals has an important role in the management of spasticity and associated motor disorders. It was considered likely to have an important role in children and young people with functional limitations and in those at risk of deformity or with actual deformity arising from limitation of movement. The GDG consensus was that the movement and positional needs of the child or young person over a 24-hour period should be considered. In assessing the postural management programme, account should be taken of sleeping and resting positions, sitting and standing, the individual's opportunities for movement and their recreational, play and leisure activities. Consideration should be given to the full range of settings in which postural management might usefully apply. Postural management might entail positioning to take account of the child or young person's tone and to support them to facilitate participation in activities appropriate to their stage of development. The GDG members' view, based on their clinical experience, was that 24-hour postural management programmes should incorporate periods of low-load active stretching (during which the child or young person engages in activities aimed at improving range of movement) and/or periods of sustained low-load passive stretching using positioning with equipment, serial casting or orthoses.

The GDG considered that training and support of family members or carers was key to successful postural management. It was also essential that a child or young person receiving this form of physical therapy was regularly reviewed to assess their needs and progress, and that the use of appropriate forms of equipment was considered.

The GDG also considered that benefits derived from physical therapy would need to be balanced against any significant disadvantage. The group agreed that adverse events associated with physical therapy were likely to be relatively uncommon and often minor (for example minor injury, discomfort or pain) or manageable with modification of the physical therapy programme. The group acknowledged that intensive physical therapy could be associated with significant disruption to the lives of the child or young person and their parents or carers, but thought that this potential risk could be mitigated through recommendations to ensure that these individuals should be provided with adequate information to allow them to make informed choices about the nature of the physical therapy programme being undertaken. The strongest evidence identified in the guideline review related to the use of task-focused active-use therapy. In particular, there was evidence that this approach could improve function and quality of life. Although long-term benefit needs further evaluation, the available evidence suggests that intensive goal-directed active-use therapy results in functional improvement, at least in the short term. Even in children and young people with an existing fixed deformity, physical therapy can be very effective in helping accommodate the deformity in order to maintain function. The GDG also noted that the deformity and reduced participation evident in children and young people who lack access to physical therapy suggested long-term benefits are to be obtained from physical therapy. The GDG members therefore concluded, based on the trial evidence and their clinical experience, that some specific physical therapy techniques, when considered in relation to specific goals, such as enhancing skill development, function and ability to participate in everyday activities or preventing complications such as pain or contractures, could provide sufficient benefit to outweigh any risks.

The group also agreed that maintaining an effective physical therapy programme was contingent upon ongoing assessment of the child or young person's needs and those of their family or carers, and the acceptability of the programme to the child or young person and their family or carers. Only through regular reassessment will it be possible to determine whether a physical therapy programme is achieving its intended goals. Over time, as the child or young person grows and develops, it would be likely that the physical therapy programme would need to be modified. The GDG made recommendations with regard to these aspects of physical therapy treatment.

Trade-off between net health benefits and resource use

Provision of physical therapy throughout childhood and into adult life has significant resource implications. The GDG acknowledged that the evidence for effectiveness for various commonly employed physical therapy interventions (including regimens aimed at muscle strengthening, stretching and postural management) was limited. Nevertheless, the group believed, based on the rational principles underlying these regimens and their experience of using these forms of physical therapy in practice, that when employed in suitably selected children and young people they were an essential component of management. Moreover, as mentioned previously, all of the physical therapy techniques detailed in the recommendations are currently in use in the management of spasticity and, therefore, the GDG agreed that it would be possible to implement the guidance without incurring an uplift in resources. In addition, resources may be recovered as a result of the GDG's decision not to recommend brief, manual passive stretching which is currently widely used. The resources associated with the GDG's emphasis on the need for appropriate concomitant physical therapy relating to BoNT-A and ITB treatment and orthopaedic surgery would be balanced by the increased likelihood of success with those other treatments, leading to greater cost effectiveness overall.

Other considerations

As stated in Section 3.1, the GDG considered physical therapy to mean physiotherapy and/or occupational therapy, and the phrase ‘physical therapy’ has been used throughout the recommendations in this guideline to incorporate both forms of therapy. The GDG consensus was that although children and young people may enter a network of care (see below) by a variety of different routes, physical therapy would always be the cornerstone of spasticity management regardless of the severity of the child or young person's condition, the underlying cause or other individual factors. The group therefore recommended that all children and young people with spasticity should be referred promptly for a physical therapy assessment by professionals within the network of care. The GDG acknowledged that in clinical practice the first physical therapy professional most children and young people would be referred to would be a physiotherapist (rather than an occupational therapist), but in some (albeit less frequent) circumstances an occupational therapist could be involved from the outset and this is reflected in the recommendation.

The GDG recognised that it is important to consider whether any equipment or techniques used in a physical therapy programme are safe and appropriate, especially with regard to comorbidities. The group was aware that some children and young people with epilepsy may be at risk of injury associated with sudden movement or falls. Proximity to certain equipment could pose a risk for them and their individual needs should be considered. The group was also aware that children and young people with serious respiratory disorders could be at risk of respiratory decompensation. Care should be taken in such cases when considering strategies for postural management to ensure that the child or young person's respiratory effort is not impaired, as this would increase the risk of respiratory failure. The group was aware that some children and young people with spasticity are at increased risk of pulmonary aspiration due to gastro-oesophageal reflux or impaired airway protective reflexes. The safe positioning of such children and young people should be considered, for example with regard to postural management. The group was also aware that children and young people who are non-ambulatory, malnourished or taking anticonvulsant therapy are at increased risk of developing osteoporosis. Children and young people with severe spasticity in particular may have one or more of these risk factors and so the GDG agreed that in such cases consideration should be given to the risk of pathological fractures occurring with certain approaches to physical therapy or the use of certain equipment.

The GDG also emphasised in the recommendations the importance of taking account of the implications for the child or young person and their families or carers of implementing a proposed physical therapy programme. Many forms of physical therapy require a sustained commitment and rely on participation of the child or young person and their family over long periods of time. The specific resources of the family and the environmental factors affecting the individual and family require careful consideration when considering the choice of physical therapy if a successful outcome is to be achieved. Certain approaches and the use of certain equipment may be impractical in individual home settings, or there may be a need to adapt the setting to enable the required physical therapy. Moreover, certain cultural practices might act as barriers to particular forms of physical therapy. For example, cultural norms might discourage activities such as swimming and hydrotherapy or group activities with members of opposite sex. In formulating physical therapy programmes, healthcare professionals should, therefore, consider potential individual barriers to implementation and seek ways of overcoming such barriers to provide programmes that are acceptable to the individual child or young person and their family or carers.

The GDG believed that appropriate information sharing and the use of written educational materials might facilitate physical therapy. In particular, when children and young people and their families have a proper understanding of their condition and its management, and of realistic goals of physical therapy, and are partners in the agreed programme of physical therapy, a successful outcome is much more likely. The GDG concluded that healthcare professionals considering who should deliver physical therapy should take account of whether the child or young person and their parents or carers are able to deliver the specific therapeutic intervention, what training might be needed for the child or young person or their parents or carers, and the wishes of the child or young person and their parents or carers. The GDG emphasised that the choice of who delivers physical therapy should be an area of negotiation between the child or young person, their parents or carers and healthcare professionals. Further, parents and carers who deliver physical therapy, and especially those involved in delivering postural management programmes, should be offered appropriate training and support. Moreover, the GDG considered that where physical therapy is being delivered as an adjunct to other more invasive treatments, it is necessary to ensure that children and young people and their parents and carers understand the need for an appropriately adapted physical therapy programme as an essential component of the overall treatment programme.

Physical therapy in association with other treatment options

While the GDG considered that physical therapy has a central role in the management of spasticity and associated motor disorders, there are many children and young people for whom it is insufficient. Other treatments, for example management with orthoses, BoNT treatment, CITB, orthopaedic surgery or SDR, may be necessary to improve function and prevent or ameliorate disability and deformity. However, in children and young people undergoing such interventions, the GDG recognised that physical therapy is essential to achieving a successful outcome.

Principles of care

The GDG's considerations in relation to the evidence identified for this review question and others identified several common themes, and the GDG concluded that these were best addressed through the development of recommendations defining overarching principles of care. These recommendations are underpinned by the concept of a network of care. Networks of care are established in various areas of NHS practice; therefore these recommendations are made with a view to reducing variations in access to care, but they are broad enough to account for local service arrangements. On balance it is expected that the guideline recommendations are sufficiently flexible to be implemented within existing resources. The specific issues and associated actions that the GDG identified as important principles of care were as follows.

Delivering care

The GDG consensus was that all children and young people with spasticity should have access to a network of care. The concept of a network of care was deemed appropriate by the GDG as the complexity of this condition means that the same types of healthcare professionals would not always be involved in the care of every child or young person. This framework can be adapted based on the services that would be most appropriate given the needs of the local community, and is recommended on the understanding that decisions related to the details of how care is delivered would be made by local trusts.

The aim of the network is to ensure that the experiences of all children and young people reflect current good practice with regard to continuity of care, multidisciplinary working and timely access to appropriate treatment. The GDG considered that achieving this aim would be contingent on the use of agreed care pathways, effective communication and integrated teamworking within the network. The group also concluded that, while it was not appropriate to recommend exact service formations, some distinction could be made between expertise that should be available locally versus that which could be provided at either a local or a regional level. Specifically, given the needs of the majority of children and young people with spasticity, the GDG concluded that expertise in paediatrics, nursing, physiotherapy and occupational therapy should be available locally, whereas access to other expertise, including orthotics, orthopaedic surgery and/or neurosurgery and paediatric neurology, may be provided locally or regionally. The group also noted that all members of the network team should be experienced in the management of spasticity in children and young people.

Although the principle of the network is based on it not having specific geographical boundaries, the GDG acknowledged that occasionally children and young people might receive treatment outside the network (for example, in a private healthcare setting or outside England and Wales). The group therefore made a recommendation that in such cases this treatment should be planned and undertaken in discussion with the network team to ensure integrated care and effective subsequent management.

Management programmes

Patient-centred outcomes were an important factor in the GDG's considerations. It was agreed that the ultimate goal of treatment is to maximise the child or young person's potential and quality of life through to adulthood. The group felt that the impact of treatment on clinical and social aspects of the child or young person's disability, and the child or young person's value judgements regarding their quality of life, needed to be considered throughout treatment. Attitudes among children and young people with regard to their disabilities may differ, as may the weight they each place on benefits of available treatment options. For example, walking ability might be improved with an appropriate orthosis, enabling a child or young person to keep up with peers and participate more fully in life, whereas for another child or young person the benefit of walking derived from an orthosis might not outweigh the harm from perceived social stigma of wearing the device. In all their discussions, the GDG members emphasised the need to take into account aspects such as the thoughts, wishes and levels of attainment of each child or young person, and their parents or carers.

The GDG members therefore considered provision of individualised management programmes to be essential, and they agreed that such programmes should be goal-focused and developed in partnership with the child or young person and their parents or carers. The group considered that the success of the clinical aspects of management should focus on the WHO's ICF Framework (children and youth version) with specific reference to the domains of body function and structure and activity and participation. Although the holistic management of spasticity was outside the scope of the guideline, the GDG took the view that management programmes should consider the possible impact of the programme on the child or young person and their family and this would take account of other aspects of care that were not covered by the guideline. In order to help children and young people and their parents and carers to make decisions jointly with healthcare professionals, they should be offered relevant, age-appropriate and developmentally appropriate information and education materials, discussion opportunities and advice. Discussion of developmental potential, and how this might be influenced by different treatments, was also highlighted as an important element of care.

Based on their clinical experience, the GDG members were also concerned that children and young people with co-existing cognitive impairment should have access to appropriate treatments. The GDG acknowledged that assessing possible treatment benefits in such children and young people was likely to be more difficult, especially if the child or young person had limited communication. To mitigate this risk, the GDG made a specific recommendation that careful consideration be given to the impact of spasticity on children and young people with cognitive impairments.

Supporting the child or young person and their parents or carers

The GDG noted that management of spasticity involves a long-term commitment for the child or young person and their family or carers, and that the network team has an important role to play in providing ongoing support throughout development. In particular, the group noted that the network team should ensure the timely provision of equipment associated with particular interventions, should play a central role during transition and should provide children and young people and their parents or carers with contact details of patient organisations which can provide support, befriending, counselling, information and advocacy.

Monitoring

The GDG identified that important elements of care included monitoring the response to treatments received, particularly any worsening of spasticity or development of secondary consequences of spasticity (for example pain or contractures), and, as a consequence, identifying the need to change individualised goals. In particular, the GDG was aware that clinical and radiological monitoring for signs of hip displacement was important to ensure timely access to orthopaedic surgery and to avoid preventable complications, and the group made specific recommendations to this effect (see Chapter 9 for further details of the rationale for these recommendations).

Recommendations

Image

Table

developed and implemented in partnership with the child or young person and their parents or carers individualised

Image

Table

reduced muscle strength selective muscle control