Family experiences and perspectives of spinal management for young children
Family experiences and perspectives of spinal management for young children
Last updated: 2nd July 2024
In January 2024, SMA UK launched a UK-wide survey asking families more about their experiences and views of their child’s spinal management.
Spinal braces
While there is no clinical evidence to prove the efficacy of 
spinal bracing in SMA, we knew that clinical opinion does vary. We had heard anecdotally that access and design varied across the country. We were also aware that research was underway in several specialist neuromuscular centres with the aim of discovering the clinical reasoning behind bracing decisions.
Lycra suits
The NHS does not currently recommend these suits for use in SMA management, and they are not mentioned in the current International Standards of Care document. However, SMA UK and the SMA REACH clinical network were acutely aware that some families were approaching the private sector to gain access to lycra-based suits for postural support for their children, particularly within the Type 1 community.
By giving all families the opportunity to document their experiences and views via our survey, we would be able to gain a broader picture of what was happening and why. This would give clinicians a more holistic understanding of which methods families think are the most effective for their children and what best practices might look like from the perspectives of those living with SMA. It would also raise awareness of why families were feeling the need to purchase spinal braces privately, gaining an insight into the real-life experiences of families purchasing orthotics privately.
Our thanks to Dr Wiliam Quench, Clinical Research Fellow in Paediatric Neurology at Sheffield Children’s Hospital who analysed our survey data and produced all the graphs.
Participants
- 52 respondents to survey
- 50 participants with viable data
- Predominantly children with SMA Type 1
- Majority of participants from the south of England
Differences across the UK
The survey asked participants about a wide range of experiences including:
- Access to spinal braces
- The design of the brace
- Private vs NHS provision
- Lycra provision
The results showed that access to orthotic bracing and the design of the braces varies hugely across the UK, with families accessing bracing through the private sector predominantly living in the South.
It was evident that the although the NHS is outsourcing spinal brace manufacture to commissioned companies, there is currently no standard of care being adhered to by the companies. Additionally there is no evidence on the performance of these braces in SMA.
It was also clear that those families who have decided to pay privately for a spinal brace or for lycra support are doing so for a wide range of reasons, including recommendations from other SMA families and not always on clinical advice.
A full summary of results >
These survey results led Sheffield University hospital to survey the Regional Neuromuscular Centres that care for children who have SMA. Their aim was to discover exactly what the Centres’ spinal management pathways look like and what clinicians’ perspectives are of them.
The two data sets will be combined into a research paper that will be published and shared to raise awareness of which methods clinicians and patients perceive to be the most effective. This information, and other research findings in the field, will be fed into the SMA Care UK project where we hope a best practice model will be established for the UK.