Botulinum Toxin A Transition Project
Working together: A collaboration between paediatric and adult rehabilitation services
For young people with chronic health conditions and disability, adolescent development includes transition from child-centred to adult-orientated health systems.
It is essential their transition is supported to ensure that young people remain engaged in the health system and health-promoting activities.
Transition for young people with neurological conditions such as cerebral palsy, acquired brain injury and spinal cord injury can be challenging.
This project focused on one challenging area for successful transition of these young people – spasticity management with botulinum toxin A (BoNT-A).
BoNT-A is a common treatment for spasticity and involves the periodic intramuscular injection of the drug into multiple muscles. A smooth transfer for BoNT-A treatment is influenced by differences in diagnostic groups, including health needs, mobility, intellectual functioning and the models of care between by paediatric and adult BoNT-A services.
The ACI provided funds to the Sydney Children’s Hospital Network to undertake this project to improve the transition of young people who require BoNT-A for the treatment of physical disabilities. Dr Simon Paget is the Project Sponsor with Dr Jane Ho the clinical lead. This report was prepared by Dr Paget and Dr Ho.
The purpose of the Botulinum Toxin A Transition Project was to understand the characteristics and needs of young people transitioning from child to adult health services in NSW and ACT who require BoNT-A treatment.
This report outlines these characteristic and needs, and identifies key areas that could be enhanced to improve the experience and outcomes for these young people, their families and carers. It can be used as a resource for service planning and development.
The numbers of young people with these conditions in NSW and ACT, their diagnoses, and healthcare needs:
- During 2018 to 2023, an average of 50 young people per year will transition from NSW paediatric BoNT-A services and require treatment in adult NSW/ACT BoNT-A services.
- These young people reside throughout NSW and ACT and will require BoNT-A services either provided by their local health district (LHD) or through partnership with other LHDs.
- 16 young people per year will have significant mobility limitations and will require wheelchair accessible facilities and clinic spaces, and may require a hoist for transfers to clinic examination and procedural beds
- 22 young people per year will have intellectual disability and will require healthcare services that acknowledge and support their complex healthcare needs to ensure quality of care for this vulnerable group.
- 14 young people per year are still using general anaesthetic and/or inhaled sedation for BoNT-A injection at the time of transition. There may be ongoing need for sedation for some of these people in adult BoNT-A services.
The experiences of young people, and their families and carers, who have experienced transition:
- The experiences of young people and their families and carers vary, from positive transition experiences to some people feeling unsupported and unprepared.
- The differences between paediatric and adult services can be a source of major stress for young people and their families and carers.
- Poorer transition experiences were characterised by:
- lack of informed decision-making and choice
- minimal information
- preparing for transition within a short timeframe
- feeling disempowered or confused by the transition process.
- Better transition experiences were characterised by:
- being told about transition a long time in advance (years)
- clear detailed information provided at multiple points in time, in a number of formats
- feeling empowered and an integral part of the team
- a more positive experience of adult services.
The experiences of clinicians working with this patient group with respect to transition:
- Clinicians identify that current transition processes can be improved.
- Key areas of improvement highlighted are:
- communication between adult and paediatric services
- sedation pathways for BoNT-A.
Mapping of NSW/ACT adult BoNT-A services in the public health system and their capacity for managing young people with complex health needs:
- Across NSW and ACT, there are 26 adult services who are known to take referrals for the ongoing management of spasticity in the transition patient population, using BoNT-A.
- There are likely to be other services available across the state. Future work should focus on establishing and maintaining a working database of available services for referring practitioners.
- Access to a hoist and adequate procedural sedation for BoNT-A injections remain significant challenges for young people transitioning to adult services.
This report outlines the following recommendations to improve the experiences and health outcomes for young people transitioning to adult care who require BoNT-A for the treatment of physical disabilities, and their families and carers:
- General principles of good transition care should be followed.
- Consideration should be given to developing centres of excellence in BoNT-A.
- Communication between paediatric BoNT-A services, BoNT-A services, patients and families should be improved to support effective transition.
- A directory of adult BoNT-A services be made available to all relevant providers and transition coordinators.
- Paediatric BoNT-A services should review young peoples’ need for sedation during the transition period.
This report has been endorsed by the ACI Transition Care and Rehabilitation Networks.