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Botulinum toxin-A for pain, care and comfort

Last update: 13 Dec 2016

Botulinum toxin-A is an anti-spasticity medication that can be injected into muscles to temporarily reduce unwanted muscle tightness in a person with severe cerebral palsy, improving their comfort and movement
Occupational therapy or physiotherapy after the injections can further improve outcomes
Botulinum toxin-A can also be called by trade names including BOTOX® and Dysport®.

Who is it for?

Botulinum toxin-A injections may be suitable for children and adults with cerebral palsy who have the following characteristics:
Type of cerebral palsy : Bilateral cerebral palsy, Diplegia, Quadriplegia

More information about cerebral palsy is contained in the What is CP? section.

Mobility : GMFCS I, GMFCS II, GMFCS III, GMFCS IV, GMFCS V

Gross Motor Function Classification System (GMFCS) – classifies severity of mobility difficulties of children and adolescents with CP.

GMFCS Level I
Walks without limitations in the home and community, climbs stairs and can run and jump, difficulties with speed and coordination.

GMFCS Level II
Walks with limitations, difficulties with long distances and uneven surfaces, uses a railing for climbing stairs, limited running and jumping.

GMFCS Level III
Walks using a hand-held mobility device such as crutches or walking frame, may use wheeled mobility for long distances.

GMFCS Level IV
Usually relies on wheeled mobility with assistance, may use powered mobility, usually needs special seating and assistance with transfers.

GMFCS Level V
Usually transported in a manual wheelchair, requires specialised seating and full assistance for transfers.

See full glossary

Arm ability : MACS I, MACS II, MACS III, MACS IV, MACS V

Manual Ability Classification System (MACS) – classifies severity of upper limb impairment: how children with cerebral palsy use their hands to handle objects in daily activities in the home, school, and community settings.

MACS Level I
Handles objects easily and successfully.

MACS Level II
Handles most objects but with somewhat reduced quality and/or speed of achievement.

MACS Level III
Handles objects with difficulty; needs help to prepare and/or modify activities.

MACS Level IV
Handles a limited selection of easily managed objects in adapted situations.

MACS Level V
Does not handle objects and has severely limited ability to perform even simple actions.

See full glossary

Communication ability : CFCS I, CFCS II, CFCS III, CFCS IV, CFCS V

Communication Function Classification System (CFCS) – classifies severity of everyday communication of people with cerebral palsy.

CFCS Level I
Effective Sender and Receiver with unfamiliar and familiar partners.

CFCS Level II
Effective but slower paced Sender and/or Receiver with unfamiliar and/or familiar partners.

CFCS Level III
Effective Sender and Receiver with familiar partners.

CFCS Level IV
Inconsistent Sender and/or Receiver with familiar partners.

CFCS Level V
Seldom effective Sender and Receiver even with familiar partners.

See full glossary

Movement disorder : Dystonia, Spasticity

More information about movement disorders can be found on our websites.

Intellectual ability : No intellectual disability, Mild intellectual disability, Moderate intellectual disability, Severe intellectual disability

A person’s thinking skills – ability to understand ideas, learn and solve problems. People with intellectual disability have difficulty with intellectual functioning which may influence learning, communication, social and daily living skills. Intellectual disability may be mild to very severe.

See full glossary

Botulinum toxin-A injections are provided by doctors and rehabilitation teams.

Cerebral Palsy Alliance provides a service for people with cerebral palsy who have spasticity and dystonia that is causing pain and difficulty with caregiving. Our specialist occupational therapists and physiotherapists can work with people after they have had botulinum toxin-A injections.

Find a Cerebral Palsy Alliance service

The Pharmaceutical Benefits Scheme will fund the full cost of the Botulinum toxin-A injections for eligible people. Speak with the doctor providing injections or visit the Pharmaceutical Benefits Scheme website for more information.

Fees will apply for occupational therapy or physiotherapy assessment and intervention, and will depend on the service provider and the number of sessions needed. Check with the provider whether fees will also apply for development of a home program, report writing or therapist travel.

Ask the service provider if you are eligible for funding to assist with fees. People with a disability living in Australia may be eligible for a health care rebate through Medicare or funding from the National Disability Insurance Scheme.

An appointment for injections usually takes at least three hours, depending on whether injections are carried out under local anaesthetic, sedation or general anaesthetic. The injecting takes five to 30 minutes and fasting is usually necessary before the appointment if sedation or general anaesthetic is used.

The time required for physiotherapy and/or occupational therapy following botulinum toxin-A injections will vary and can be discussed with the therapist.

More about botulinum toxin-A for pain care and comfort

Many people with cerebral palsy have spasticity and/or dystonia which make their muscles stiff, tight and painful. This can make movement difficult, so it is hard to get comfortable and do everyday things.

Botulinum toxin-A injections are used to treat spasticity and dystonia to reduce muscle overactivity and stiffness in children and adults with cerebral palsy. They are used to help improve movement and reduce pain. After the botulinum toxin-A injections it can be easier for parents and caregivers to help a person with cerebral palsy to be comfortable and achieve desired positions in bed and seating1. As the effects wear off after three to six months, muscle tightness can return and re-injection may be suggested2. Botulinum toxin-A injections are just one part of a multidisciplinary treatment program.3

The medication is injected into specific muscles by a doctor in a hospital, usually with local anaesthetic or sedation. Physiotherapists and/or occupational therapists can then take advantage of this window of opportunity following the injection, to further lower pain and improve the person’s muscle movement and comfort. Treatments they may use include serial casting to manage muscle contractures, splints or orthoses for the arms or legs, strengthening activities, adaptive equipment, or a combination of all of these4. Finally, the child or adult may be given activities to practice at home.

Temporary

Side effects of botulinum toxin-A injections are usually temporary, mild in nature and don’t require treatment.5 Localised side effects are more common (ranging from 0-30 per cent)3 and include bruising, swelling, pain at the site of injection, and weakness around the area.4-7

Serious

Significant side effects are rare but can include flu-like symptoms, respiratory difficulties, generalised weakness and dysphagia4-8. People with more severe physical impairments who have health concerns such as breathing or swallowing difficulties and gastrostomies7 have a higher risk of serious side effects4-6. Children appear to be at greater risk than adults8. Families will be informed of the potential risks before treatment.

Assessments

There are two types of assessment a person requires when receiving botulinum toxin-A for pain, care or comfort.

Thorough physiotherapy or occupational therapy assessments before and after botulinum toxin-A injections are essential for helping decide which muscles should be injected and planning the therapy which is completed after the injections. Goals for the interventions will be developed in collaboration with the person and their family.

The purpose of an outcome measure is to determine if the intervention has met an individual’s needs. The occupational therapist or physiotherapist, together with the person and their family, will determine the most suitable measure to use. Typical outcome measures for this intervention include:

  • Range of Motion – measures the amount of movement at a joint which tells us about muscle length
  • Modified Tardieu Scale – measures spasticity
  • Pain – various scales measuring pain exist
  • Canadian Occupational Performance Measure (COPM) – measures change on everyday activities that people have identified as a problem
  • Goal Attainment Scaling (GAS) – measures whether the individual’s goals have been achieved and can also be used to measure changes in care and comfort.

Best available research evidence

We searched the medical, psychological and allied health literature to find research evaluating the outcomes of botulinum toxin-A injections for people with significant cerebral palsy at GMFCS Levels IV and V.
The search aimed to find high level evidence (systematic reviews or randomised controlled trials (RCTs)) investigating if this intervention reduces pain and improves care and comfort. Research was excluded if it evaluated the impact of botulinum toxin-A injections on muscle spasticity alone or was used with people with cerebral palsy who were able to walk.

There were no eligible studies evaluating the use of botulinum toxin-A for pain or care and comfort in adults with cerebral palsy. A systematic review1 of botulinum toxin-A in children with cerebral palsy at GMFCS Levels IV and V was located but not eligible as best available evidence. It included only one RCT. This RCT evaluated botulinum toxin-A for reducing post-surgical pain, which was not the focus of this review.

The best available evidence, therefore, was one RCT (Level II evidence) of 41 children at GMFCS Levels IV and V, aged two years to 16 years6. All children had treatment goals related to improving comfort or easing care. The children were randomly allocated to one of two groups. One group of children received botulinum toxin-A injections to their arms and/or legs. The other group had a sham intervention which mimicked, but did not actually involve, having botulinum toxin-A injections.

Overall, there is moderate quality evidence from one RCT to support the use of botulinum toxin-A injections for improving ease of care and comfort in children with cerebral palsy at GMFCS Levels IV and V. There is insufficient evidence regarding the effectiveness of botulinum toxin-A for reducing pain. Botulinum toxin-A injections appear to be safe for use with children with cerebral palsy at GMFCS Levels IV and V.

No high-level research was located which evaluated pain, care and comfort outcomes for adults with cerebral palsy. The unique needs of each adult with spasticity or dystonia contributing to pain and difficulties with comfort and caregiving should be discussed with the rehabilitation team to identify whether botulinum toxin-A injections would be worthwhile.

Care and comfort improved

In a study of 41 children6, parents of children who received botulinum toxin-A injections reported greater improvement in caregiving goals and satisfaction with caregiving, that is, helping their child to be comfortable and to achieve desired positions in bed and seating, compared with children who did not receive botulinum toxin-A injections. In addition, improvements in care and comfort goals were achieved faster by those children who received botulinum toxin-A injections compared with those who didn't.

Pain

Fewer than half the children were identified by their parents as experiencing pain at the start of the study. Children who were identified to have pain, and who received botulinum toxin-A injections, experienced significant reductions in pain levels four months after injections. These changes however were not significant when compared with children who did not receive botulinum toxin-A injections.

Mild side effects were mainly associated with the injection and included bruising and localised pain at the site of injection. There was no difference between those who received botulinum toxin-A injections and those who didn’t with respect to moderate and severe side effects.

People with cerebral palsy and their families are encouraged to seek support from health professionals if they are interested in exploring whether botulinum toxin-A injections are appropriate for them. The decision to have botulinum toxin-A injections involves understanding the evidence, time and resources required, the preferences of the person and their family, and the expertise of healthcare providers.

Date of literature searches: July 2016

  1. Pin, T.W., Elmasry, J. & Lewis, J. (2013). Efficacy of botulinum toxin A in children with cerebral palsy in Gross Motor Function Classification System levels IV and V: A systematic review. Developmental Medicine & Child Neurology, 55(4), 304-313 doi: 10.1111/j.1469-8749.2012.04438.x.
  2. Managing Spasticity in Children with Botulinum Toxin Injections. Retrieved August 19, 2014, from http://www.chw.edu.au/kidsrehab/brain_injury/information_sheets/physical_changes/botulinum_toxin_injections.htm
  3. Esquenazi, A., Novak, I., Sheean, G., Singer, B.J. & Ward, A.B. (2010). International consensus statement for the use of botulinum toxin treatment in adults and children with neurological impairments – Introduction. European Journal of Neurology, 17(Suppl.2), 1-8. See abstract
  4. Love, S.C., Novak, I., Kentish, M., Desloovere, K., Heinen, F., Molenaers, G., O’Flaherty, S. & Graham, H.K. (2010). Botulinum toxin assessment, intervention and after-care for lower limb spasticity in children with cerebral palsy: International consensus statement. European Journal of Neurology, 17(Suppl.2), 9-37. See abstract
  5. O’Flaherty, S., Janakan, V., Morrow, A., Scheinberg, A. & Waugh, M. (2011). Adverse events and health status following botulinum toxin type A injections in children with cerebral palsy. Developmental Medicine & Child Neurology, 53(2), 125-130.
  6. Copeland, L., Edwards, P., Thorley, M., Donaghey, S., Gascoigne-Pees, L., Kentish, M., Lindsley, J., McLennan, K., Sakzewski, L & Boyd, R. (2014). Botulinum Toxin A for nonambulatory children with cerebral palsy: A double blind randomized controlled trial. The Journal of Pediatrics, 165(1), 140-146.e4 doi: 10.1016/j.jpeds.2014.01.050. See abstract
  7. Edwards, P., Sakzewski, L., Copeland, L., Gascoigne-Pees, L., McLennan, K., Thorley, M., Boyd, R. N. (2015). Safety of Botulinum toxin type A for children with nonambulatory cerebral palsy. Pediatrics, 136(5), 895-904. doi:10.1542/peds.2015-0749. See abstract
  8. Montastruc, J., Marque, P., Moulis, F., Bourg, V., Lambert, V., Durrieu, G., . . . Montastruc, F. (2016). Adverse drug reactions of botulinum neurotoxin type A in children with cerebral palsy: A pharmaco-epidemiological study in VigiBase. Developmental Medicine and Child Neurology, (Early view). doi:10.1111/dmcn.13286
Find out about CP Check-Up™

Cerebral Palsy Alliance offers a service called CP Check-Up™ which provides ongoing surveillance of the health and well-being of our clients aged 0-18 years.
The information on this page was developed using the best research evidence combined with the expertise of clinicians and people with cerebral palsy and their families. It is provided to help people with cerebral palsy, their families and caregivers, clinicians and service providers make decisions about suitable interventions. This information is intended to support, but not replace, information exchanged, and decisions made, between people with cerebral palsy, their families and health professionals.