Physical activity with cerebral palsy

Published: 15/07/2020

Introductory videos

Living with Cerebral Palsy a video about daily life about a 17 year old who has severe cerebral palsy

3 Strangers Discuss Life with Cerebral Palsy

 

What is cerebral palsy

Definition: ‘A static neurological condition resulting from brain injury that occurs before cerebral development is complete.’ (Krigger, 2006)

Incidence

Worldwide

• 2 to 3 per 1,000 live births (commonest cause of motor disability in childhood)
• Increases to 40 to 100 per 1,000 live births in premature babies and those of a low or very low birth weight (Sewell et al, 2014)

United Kingdom

• Estimated 1 in 400 babies
• ONS figures indicate that out of ~700, 000 babies born each year in England and Wales there may be 1,700 new cases of cerebral palsy each year (Cerebral Palsy UK, 2020)

Associated impairments

For those affected

• 3 in 4 experience pain
• 1 in 2 have an intellectual impairment
• 1 in 3 unable to walk
• 1 in 4 unable to talk
• 1 in 4 has bladder control problems
• 1 in 4 has epilepsy
• 1 in 4 has a behaviour disorder
• 1 in 5 has sleep disorder
• 1 in 5 has saliva control problems
• 1 in 10 has a severe vision impairment

(World Cerebral Palsy Day, 2014)

Causes

• Brain injury can occur prenatally, perinatally or up to two years old (due to continuing brain development). 

Prenatally (70 to 80% of cases)	Neonatal risk factors	Postnatal (10 to 20% of cases)
·        Causes largely unknown	·        Birth before 32 weeks gestation ·        Birth weight of less than 5lb 8oz ·        Intrauterine growth retardation ·        Intracranial haemorrhage ·        Trauma	·        Bacterial meningitis ·        Viral encephalitis ·        Hyperbilirubinemia ·        Motor vehicle collisions ·        Falls ·        Child abuse

Medical malpractice 

• Health care professionals may fail to monitor for appropriate respond to signs of fetal distress (signs that baby is deprived of oxygen and is likely in need for an emergency C-section)

Other problematic behaviours 

• Deviating for standard of care for a high-risk pregnancy
• Inducing labour when it is not safe to do so 
• Using birth-assisting tools e.g. Forceps and vacuum extractors (Nobakht et al., 2013)

Diagnosis

• Made on clinical grounds after taking a detailed antenatal and family history and carrying out a full examination
• Failure of children to achieve expected milestones in motor development in the presence of abnormal movement or muscle tone (excessive stiffness or floppiness) is characteristic

Information from Table 1 Expected milestones in motor development that may be abnormal in neurodevelopment conditions (Sewell et al, 2014, p.10)

Classification

Surveillance of Cerebral Palsy in Europe

·        Recommends describing the distribution (unilateral or bilateral) of motor symptoms and classifies the main motor types into four groups: spastic, dyskinetic, ataxic and mixed.

·         

Classification of tone and movement abnormality
Spastic	·        Velocity dependent increased tone with hyperreflexia and upper motor neurone signs ·        Tone increased but not necessarily constant
Dyskinetic	·        Recurring, uncontrolled and involuntary movements ·        Tone abnormally varies May be ·        Dystonic: characterised by hypokinesia (reduced activity) and hypertonia (increased tone) resulting in stiff movements ·        Choreoathetotic: characterised by hyperkinesia (increased activity) and hypotonia (reduced tone) resulting in uncoordinated writhing and jerky movements
Ataxic	·        Generalised hypotonia with loss of muscle coordination ·        Characterised by abnormal force, rhythm and control or accuracy of movement
Mixed forms	·        No one tone abnormality and movement disorder predominates ·        Commonest mixed type = combination of spasticity and dyskinesia

(Sewell et al, 2014)

Gross Motor Functional Classification System (GMFCS)

An aged dependent classification system that groups children into one of five levels based on their ability to mobilise by reflecting their overall gross motor skills and severity of their motor impairment.

Summary of gross motor function by level
Level I	Walks without limitations
Level II	Walks without assistive devices, but with limitations (e.g. walking long distances, balancing and using the stairs)
Level III	Walks using a hand-held mobility device (e.g. K-walker frame or crutch)
Level IV	Limited self-mobility, child may use powered mobility independently (e.g. operating a joystick activated powered wheelchair
Level V	Child transported in a manual wheelchair; severely limited self-mobility even with powered assistive devices; child unable to operate a joystick activated powered wheelchair

(Sewell et al, 2014)

Qualitative experience

Lindsay (2015)’s Literature Review

Synthesised the experiences and perspectives of youth (children and young adults) living with cerebral palsy to inform the development of rehabilitation and social programmes. To achieve this, she used 33 articles involving a total of 390 participants aged from 2 to 25 years old from six countries (Sweden, Canada, Australia, UK, US and Netherlands). She collated the information into the following themes: body structure and function; activity; personal factors; mental health; environment; participation; school and learning; work and civic engagement. These themes are discussed in this section and section 2.

Body structure and function

·        Youth from 14 studies reported experiencing constant pain as a feeling of muscle soreness that permeated their lives

·        Pain often located in the hips, back, bladder and upper limbs

·        Some who were often in pain, did not always tell their parents because they did not want to worry them

·        Some described their muscles ‘feeling like jelly’

·        Other expressed frustration with fatigue and limited physical functioning

·        Some reported managing their physical limitations by adapting or restricting their activity

Activity

·        Reported many activities of daily living (e.g. bathing) were challenging but manageable

·        Pain and fatigue often restricted activities of youth, including their ability to be mobile and participate in typical activities of daily living

·        Expressed frustration with struggling to walk and often experienced stigma while using an assistive device

·        Some described their assistive devices (e.g. walkers, wheelchairs) as playing an important role in helping them to be more independent and engaging in activities with peers

Verschuren et al (2012)

Explored the facilitators and barriers to participation in physical activity in youth with cerebral palsy. They used semi-structured focus groups (children’s and parents’ were separate) with 33 ambulatory youths (18 boys and 15 girls; aged from 7 to 17 years who could walk independently unaided and were able to respond to interview questions) from 5 special education schools in the Netherlands and their parents (aged from 32 to 54 years; 31 mothers and 2 fathers). The participants were asked a general question about the children’s most recent experiences with physical activity, then discussed the facilitators and barriers to this.

Youth participants

Sport	No. of participants
Participated in regular sport more than once a week   Active in segregated programs for children with disabilities   Members of a community football club with typical developing peers   No sport	6   4   2   21

Findings

·        For children who can walk independently, strengthening and exercise programs are recommended to reverse deconditioning secondary to impaired mobility and to optimise physical functioning and enhances overall well being

·        “Several factors should be considered when matching the child to the right sport, including the child’s current health status and physical abilities, the child’s psychological maturity, the level of competition and position played, adaptive and protective equipment, modification of the sport, and the parents’ and child’s understanding of the inherent risks of injury.”

PERSONAL AND ENVIRONMENTAL BARRIERS AND FACILITATORS OF PHYSICAL ACTIVITY IN CHILDREN AND ADOLESCENTS
Personal barriers	Personal facilitators
Physical abilities of the child ·        Lack of energy/fatigue ·        Feeling an attractive sport is too difficult ·        Having the opinion that being active is not good for the body ·        Pain (in general and during exercise) ·        Fear of increased risk of an injury ·        Learning the required motor skill is too time consuming Child-related psychological factors ·        Attitude (decreased motivation) of the child ·        Feeling like an outsider ·        Feeling insecure or ashamed ·        Child does not accept the (extent of their) disability ·        Presence of a cognitive impairment ·        Perception of physical activity and sports as not being ‘fun’	Physical abilities of the child ·        Perception of relaxation as a benefit of exercise ·        Belief that symmetrical movement is beneficial ·        Belief that exercise has health benefits Child-related psychological factors ·        Desire to be active ·        Positive attitude towards being challenged ·        Acceptance of the disability ·        Views sports and physical activity as an opportunity for social interaction ·        Having perseverance ·        Feels accepted as part of a group ·        Feels confident about him or herself ·        Experiences enjoyment ·        Views exercise as an opportunity to ‘clear the mind’
Environmental barriers	Environmental facilitators
Parental factors ·        Parent not accepting the extent of the disability ·        Parental dissatisfaction with the environment (eg, facility too remote or unclean) ·        Fear of child not fitting in (ie, not being accepted by the other children, motor tasks too challenging, or poor fit between their child and the activity) ·        Parental challenges with observing the child struggling with sport (ie, losing) ·        Challenges with managing the day-to-day aspects of raising a child with a disability ·        Opinion that physical activity and sport are unimportant ·        Hesitating to ask a trainer (volunteer) to support their child Opportunities for sport and physical activity ·        Lack of opportunities ·        Lack of awareness of possibilities ·        Not knowing what “suits” the child Practical feasibility ·        Lack of access to transportation ·        Lack of time ·        Financial restrictions ·        Time of training is inconvenient Social environment ·        Not being accepted by peers ·        Not being accepted by other parents ·        Being bullied Facility/program factors ·        Trainer often not aware of the complexity of the child ·        Teams are too big ·        Not “open” for children with disabilities ·        Waiting list ·        Child is not allowed to play matches ·        Being underestimated ·        No team that “suits” the child (level and age)	Parental factors ·        Parental awareness of the benefits of physical activity ·        Parental perseverance (in exploring sport options/adaptations) ·        Parental assertiveness (in advocating for their child) ·        Having a positive attitude Opportunities for sport and physical activity ·        Awareness of opportunities for sport and physical activity (eg, through clinics) ·        School encourages physical activity Practical feasibility ·        Access to physical activity or sports in the community Social environment ·        Being accepted by peers ·        Being accepted by other parents Facility/program factors ·        Having a good trainer ·        Good communication between trainers/coaches ·        Training in small groups

Information from: (Verschuren et al, 2012, p. 490)

Personal factors

·        Some experienced difficulties developing the skills need to become independent because their parents were overprotective

“Try a few times and then you will succeed. But sometimes it might look like the world is gonna end, but for some reason, for me I get over these things because I’ve been having CP for 13 years already so I’m pretty used to it” (Shikako-Thomas et al, 2009, p.829 cited in Lindsay, 2015) 

·        When it came to coping, youth demonstrated resilience and strategies for maintain self-concept (Lindsay, 2015)

Mental Health

·        Experiences stress, depression and anxiety related to bullying from peers at school and social isolation linked to bodily differences of living with CP

·        Youth longed to be normal and were frustrated with having to cope with bodily differences (Lindsay, 2015)

Facilities and services

·        Some reported social and health services enhanced their participation while other lacked services

·        Public transport, along with lack of accessible environments at school and in the community, influences the youth’s ability to go out and/or socialise with peers

·        Most important barrier is the availability of education and training

·        Most daily encountered barrier was home design (Nobakht et al., 2013)

Policies  

·        Availability of facilities and administration of policies were not sufficient to meet the needs of children with disabilities

·        Policy makers and responsible organization need to develop their policy to integrate children with CP into society (Nobakht et al., 2013)

Participation

·        Youth described the importance of receiving support from family members to help them managing their CP. These supports were invaluable in building self-confidence and encouraging youth to participate in the community

·        At the same time, peers and family could act as barriers to participation

·        E.g. peers were commonly unsupportive of youth with CP and parents were sometimes described as overprotective

·        Many were able to participate in leisure and recreational activities, which helped them to maintain social normalcy

·        Others found it difficult to take part due to functional limitations and/or inaccessible facilitates

·        Other found activities they could take part in (Lindsay, 2015)

School and learning

·        Frequently encountered discrimination and lack of understanding about CP among classmates and teachers

·        Often affected their ability to feel included and participate in school and extracurricular activities

·        Some mentioned difficulties with schoolwork itself, while others felt frustrated by lack of support in the school system (Lindsay, 2015)

Work and civic engagement

·        Some had employment experience, while others reported difficulties getting job due to fatigue, lack of independence, self-care skills or inaccessible transportation

·        Described future aspirations for education and work, but anticipated needing support to obtain these goals (Lindsay, 2015)

Current recommendations for physical activity

Verschuren et al’s (2016) paper presents the first CP-specific physical activity and exercise recommendations. The recommendations are based on a comprehensive review and analysis of the literature, expert opinion, and extensive clinical experience. These recommendations are based on evidence from randomized controlled trials and observational studies involving children, adolescents, and adults with CP, and previous guidelines for the general population. The authors intend for the recommendations to be used to guide healthcare providers on exercise and daily physical activity prescription for individuals with CP.

Recommended daily physical activity level

Moderate to Vigorous

·        Frequency: more than 5 days per week

·        Intensity: moderate to vigorous intensity

·        Time: 60 mins

·        Type: a variety of activities

Sedentary

·        Time: Less than 2 hours a day or break up sitting for 2 minutes for every 30-60 minutes

·        Type: Non-occupational, leisure-time sedentary activities such as watching television, using a computer and/or playing video games

Recommended exercise prescription

Cardiorespiratory (aerobic) exercise

·        Frequency: Start with 1-2 sessions a week and gradually progress to 2 sessions a week

·        Intensity: More than 60% of peak heart rate, or more than 40% of the heart rate reserve, or between 46% and 90% VO_2peak

·        Time: A minimum time of 20 minutes per session, and for at least 8 or 16 consecutive weeks, depending on frequency (2 or 3 times a week).

·        Type: Regular, purposeful exercise that involves major muscle groups and is continuous and rhythmic in nature

Resistance exercise

·        Frequency: 2 to 4 times a week on non-consecutive days

·        Intensity: 1 to 3 sets of 6 to 15 repetitions of 50 to 85% repetition maximum

·        Time: no specific duration of training has been identified for effectiveness. Training period should last at least 12 to 16 consecutive weeks

·        Type: Progression in mode from primarily single-joint, machine-based resistance exercises to machine plus free-weight, multi-joint (and closed-kinetic chain) resistance exercises. Single-joint resistance training may be more effective for very weak muscles or for children, adolescents or adults who tend to compensate when performing multi-joint exercises, or at the beginning of the training

(Verschuren et al, 2016, p.803)

Interventions and evidence-base

Aerobic exercise

Systematic review (and AACPDM report)

·        Roger’s et al (2008) assessed the evidence regarding the effectiveness of aerobic training interventions for children with cerebral palsy (target population included children with any severity of cerebral palsy, aged 2 to 17 years).

·        Included 13 studies of a mixture of designs: pre-test/post-test, cohort studies, RCTs, single subject designs, case studies and a case report.

Included studies
Number of studies (type of study)	Methods
1 (RCT)	Control group received the same as the experimental group but did not participate in the additional training sessions
1 (RCT)	Added ‘active encouragement’ to the exercise sessions for the experimental group
1 (Cohort)	Used participants that dropped out or did not begin training as the control group
5 (Pre-test/Post-test)	Compared of a single group using a variety of aerobic exercise programs ranging from games to bicycle goniometry

·        Benefits of aerobic exercise for those with disabilities include increased cardiovascular capacity and endurance, weight management and lower blood lipid level, preservation of bone mass and overall maintenance function

·        Complications - no reports of increased spasticity, medical problems or the occurrence of musculoskeletal trauma in any of the studies reviewed

·        Limited evidence suggests that aerobic exercise training program demonstrate improvements in physiological measures of aerobic fitness

·        Author’s conclusion – evidence suggests that aerobic exercise with children with CP can improve physiological outcomes, but the influence of these changes on outcomes representing activity and participation are unknown

Spasticity Management: Botulinum Toxin (Botox)

·        Reason for Use of Botox: Botulinum Toxin is used to Reduce Increased Tone in Selected Muscles, to Enable the Establishment of New Movement Patterns and Reduction in Contractures (Cosgrove et al, 1994)

·        How it Works: Botox is taken up by Endocytosis at the Nerve Terminals Blocking the Release of Synaptic Vessels. This in Turn, Blocks the Action of the Synapse of the Neuromuscular Junction for Several Months Until a New Neuromuscular Junction is Formed

·        Evidence-Base: The Short-Term Results have been Extremely Encouraging for Improving Gait in Children with Spastic Hemiplegia and Diplegia, Improving Upper Limb Function and Management of Hip Pain (Koman et al, 2000)

Neurodevelopmental Therapy (NDT)

·        Bobath Approach: Suggests Moving and Handling in a Certain Way could Inhibit Spastic Patterns of Movement, allowing the Emergence of Normal Patterns.

·        It is a Type of Specialised Handling with Control being given at Key Points to Inhibit Spasticity and Guide Movements – Taught to Parents to Continue Rehab at Home

·        Rationale: The Rationale Behind the Bobath Approach was Developed around the Idea that Brain Lesions Result in the Release of Abnormal Movement Patterns of Coordination and Abnormal Postural Tone (Bobath, 1994)

·        The Theoretical Hierarchical Rationale for the Bobath Approach has been Refuted by More Recent Studies on the Nervous System. For Example, a Review of the Evidence of NDT by Butler and Darrah (2001) Concluded that there was No Consistent Evidence that Facilitated More Normal Motor Development

Strength Training

·        There has been Growing Evidence of the Benefits of Strength Training Programmes in Improving Functional Ability in Individuals with Cerebral Palsy

·        Rationale: Improve Muscle Strength and Muscle Endurance to Help with Activities of Daily Living, as well as Allowing for Rest Days for the Muscles to Relax

·        Evidence Base: A Study Conducted by Dodd et al (2003) Demonstrated Gains in Strength and Speed of Walking in Individuals with Cerebral Palsy. A Qualitative Study Conducted by McBurney et al (2003) Identified that Children Perceived Themselves to be Stronger, More Flexible, Able to Negotiate the Stairs More Easily and Had a Greater Sense of Wellbeing. Large Improvements in Strength

·        NICE Guidelines: Study on Progressive Resistance Training Group for Children with Cerebral Palsy Showed an Increase in Strength, Posture, Flexibility and Gait. Some Strength Exercises included Working on Knee Flexion and Knee Extension.

Assistive Technology – Orthotics

·        Orthotics offers a Conservative Approach to Prevent Deformity, Improve Joint Alignment and Biomechanics and Improve Functions in Individuals with CP

·        The Orthotics Provide the Individual with Intimate Control of Joints (Morris, 2002)

·        Evidence Base: Lower Limb Orthotics can be used to Provide Stability in Standing Transfers, Clearance in the Swing Phase of the Gait Cycle and Support for Individuals with Limited Walking Ability due to Cerebral Palsy. However, Orthoses need to be Used with Care as Excessive Use can Lead to Immobility and Consequent Muscle Weakness and Atrophy (Shortland et al, 2002)

·        Types of Orthoses include Hip and Spine Orthoses (HASO) to Control Hip and Spine Positioning and Thoraco-lumbosacral Orthoses (TLSO) to Control Spinal Curvature during Growth

Reference list

·        Bobath KA (1984) Neurological Basis for the Treatment of Cerebral Palsy. Clinics in Developmental Medicine, no 75, 2^nd Edition, London: MacKeith Press

·        Butler C, Darrah J (2001) Effects of Neurodevelopmental Treatment (NDT) for Cerebral Palsy: An AACPDM Evidence Report. Developmental Medicine and Child Neurology 43: 778-790

·        Calderón, C.B. (2018) ‘Design, Development and Evaluation of a Robotic Platform for Gait Rehabilitation and Training in Patients with Cerebral Palsy’, Research Gate. [Illus.] Available at: https://www.researchgate.net/publication/326345460_Design_Development_and_Evaluation_of_a_Robotic_Platform_for_Gait_Rehabilitation_and_Training_in_Patients_with_Cerebral_Palsy. (Accessed: 2 July 2020).

·        Cerebral Palsy UK (2020) WE SUPPORT PEOPLE WHO ARE AFFECTED BY CEREBRAL PALSY. Available at: https://www.cerebralpalsy.org.uk/#. (Accessed: 2 July 2020).

·        Cosgrove AP, Corry IS, Graham HK (1994) Botulinum Toxin in the Management of the Lower Limb in Cerebral Palsy. Developmental Medicine and Child Neurology 36: 386-396

·        Dodd JK, Taylor FN, Graham HK (2003) A Randomised Clinical Trial of Strength Training in Young People with Cerebral Palsy. Developmental Medicine and Child Neurology 652-657·

·        Koman LA, Mooney JF, Paterson-Smith BP et al (2000) Botulinum Toxin Type a Neuromuscular Blockade in the Treatment of Lower Extremity Spasticity in Cerebral Palsy: A Randomised, Double-Blind, Placebo-Controlled Trial. Journal of Paediatric Orthopaedics 20: 108-115

·        Krigger, K.W. (2006) ‘Cerebral Palsy: An Overview’, American Family Physician, 73(1), pp. 91-100.

·        Lindsay, S. (2016) ‘Child and youth experiences and perspectives of cerebral palsy: a qualitative systematic review’, Child: care, health and development, 42(2), pp. 153-157. [Online] Available at: https://onlinelibrary.wiley.com/doi/full/10.1111/cch.12309?casa_token=lJ2WQXkgC9QAAAAA%3Au6cUSQj7iOJgFHO7phLJ_ZPbCNbkrIqMOP3LsAuxJbmImwGWIamhd5Wn0RNnvlcDOZxt53uiqz00w1Q. (Accessed: 2 July 2020).

·        McBurney H, Taylor NF, Dodd KJ et al (2003) A Qualitative Analysis of the Benefits of Strength Training for Young People with Cerebral Palsy. Developmental Medicine and Child Neurology 45: 658-633

·        Morris C (2002) A Review of the Efficacy of Lower Limb Orthoses Used for Cerebral Palsy. Developmental Medicine and Child Neurology 44: 205-211  

·        Nobakht, Z., Rassafiani, M., Rezasoltani, P., Yazdani, F. (2013) ‘Environmental barriers to social participation of children with cerebral palsy in Tehran’, Inner Rehabilitation Journal ,11.

·        Physiopedia (2020) Cerebral Palsy Introduction. Available at: https://www.physio-pedia.com/Cerebral_Palsy_Introduction#cite_note-2. (Accessed: 5 July 2020).

·        Rogers, A., Furler, B.L., Brinks, S. and Darrah, J. (2008) ‘A systematic review of the effectiveness of aerobic exercise interventions for children with cerebral palsy: an AACPDM evidence report’, Development Medicine and Child Neurology, 50, pp. 808-814.

·        Sewell, M.D., Eastwood, D.M. and Wimalasundera, N. (2014) ‘Managing common symptoms of cerebral palsy in children’, BMJ, 349. [Online] Available at: https://www.bmj.com/content/349/bmj.g5474. (Accessed: 2 July 2020).

·        Verschuren, O., Wiart, L., Hermans, D. and Katelaar, M. (2012) ‘Identification of Facilitators and Barriers to Physical Activity in Children and Adolescents with Cerebral Palsy’, The Journal of Pediatrics, 161(3), pp. 488-494.

·        Vershchuren, O., Peterson, M.D., Balemnans, A.C.J. and Hurvits, E. (2016) ‘Exercise and physical activity recommendations for people with cerebral palsy’, Developmental Medicine and Child Neurology, 58(8), pp.798-808. [Online] Available at: https://onlinelibrary-wiley-com.uea.idm.oclc.org/doi/full/10.1111/dmcn.13053. (Accessed: 7 July 2020).

·        World Cerebral Palsy Day (2014) WCPD What is CP poster English USA. Available at: https://worldcpday.org/tools/#1493959825296-f73f835a-071e. (Accessed: 2 July 2020).