NICE updates advice on cerebral palsy operation
Today (15 December) the National Institute for Health and Care Excellence (NICE) has updated its guidance on an operation that could improve the quality of life of some people who have cerebral palsy.
Selective dorsal rhizotomy is a major operation used to treat lower limb muscle rigidity (spasticity); a common symptom of cerebral palsy. It involves cutting some of the sensory nerves in the lower spinal column to reduce muscle stiffness in the legs. Following intensive physiotherapy and aftercare, people may experience reduced stiffness, cramps and spasms, as well as improved mobility (e.g. walking).
In 2006, NICE advised that the NHS could consider this operation for people with cerebral palsy, providing that doctors fully explained the uncertainties and risks to the patients and their families or carers before obtaining their consent. NICE also asked doctors to inform their clinical governance leads (usually the hospital's medical director) and to keep detailed records of everyone who had the procedure so that more could be learnt about it.
As further research has been published, NICE now knows more about how well the procedure works and how safe it is. The latest evidence and expert opinion suggests that treatment can improve spasticity in the longer term. For this reason, NICE believes that doctors can now consider offering the procedure under their hospital's standard arrangements for audit and governance. However, as the side effects and risks of the treatment can be serious, NICE still expects doctors to carefully explain these to the patients and their families or carers involved beforehand. The guidance does not advise whether or not the procedure should be funded - these decisions are made locally.
Mr Barrie White, a Consultant neurosurgeon and Vice-Chair of the independent committee that developed the guidance for NICE said: "We have updated our guidance on selective dorsal rhizotomy because we now have a greater evidence base regarding its safety and efficacy. It is clear that the operation can improve the comfort and mobility of some people who have cerebral palsy.
"However, the operation still carries some serious risks, such as harm to bladder function and walking ability. If appropriately trained healthcare professionals wish to offer this treatment, they must fully explain to the families what is involved and that further surgery may be needed. Families should also understand that this operation is not a cure for spasticity and that prolonged physiotherapy and aftercare may be necessary.
"NICE is aware that the surgical techniques used within this procedure are still evolving, and so is also asking for further research into selective dorsal rhizotomy so that we can be sure that it continues to represent a positive treatment option for people who have this condition."
Notes to Editors
About cerebral palsy
1. Cerebral palsy is a permanent disorder that affects the parts of the brain that control movement, posture and coordination, particularly in the legs.
2. Approximately 1,800 babies are diagnosed with the condition each year. It may be apparent at or around the time of birth or may not become obvious until early childhood.
3. Muscle rigidity (spasticity) is thought to occur because too much information is sent from the muscles to the brain. Lower limb spasticity affects around 80% of people with cerebral palsy. It can make walking and sitting difficult, can affect hygiene and can cause discomfort, cramps, spasms and pressure sores.
4. For further information about cerebral palsy and spasticity, visit: http://www.nhs.uk/conditions/cerebral-palsy/pages/introduction.aspx.
About the guidance
1. The updated guidance replaces the version from 2006. For further information about the Interventional Procedures guidance 373 on the "Treatment of spasticity in cerebral palsy by selective dorsal rhizotomy", visit: www.nice.org.uk/IPG373.
2. Selective dorsal rhizotomy is a treatment option for lower limb spasticity in cerebral palsy. It is a major surgical procedure that aims to reduce the amount of information carried by the sensory nerves. With the patient under general anaesthetic, a cut is made in the lower back and into the spinal canal to expose the spinal cord and lower nerves. The surgeon then severs some of the nerves that carry information from the muscles in the legs. After the procedure patients will need long-term physiotherapy and aftercare and may have to learn to walk again.
3. NICE first published guidance (IPG195) on the “Treatment of spasticity in cerebral palsy by selective dorsal rhizotomy” in 2006. This advised that healthcare professionals must make special arrangements for patient consent, clinical governance and audit if they wished to offer it as a treatment option. This was because, while the evidence at the time suggested that the procedure is safe, there were uncertainties about how well it worked.
4. As part of its standard guidance processes, NICE has reviewed the evidence published since its original guidance and sought expert opinion. This suggests that while there are risks of serious complications, such as deterioration in bladder function and walking ability, these are well recognised. Furthermore the evidence on its efficacy is now adequate. For these reasons, NICE believes that healthcare professionals across the NHS can offer the procedure under their hospital's normal arrangements for consent, clinical governance and audit.
About Interventional Procedures guidance
1. To fall within the remit of the Interventional Procedures Programme, a notified procedure must:
- Already be available within the NHS or be about to be used for the first time in the NHS outside of formal research, and
- Involve an incision or a puncture or entry into a body cavity, or the use of ionising, electromagnetic or acoustic energy, and
- Be either not yet considered standard clinical practice, or a standard clinical procedure, the safety and efficacy of which has been called into question by new information.
2. NICE's Interventional Procedures guidance applies to NHS healthcare settings in England, Northern Ireland, Scotland and Wales. The guidance makes recommendations on the safety of a procedure and how well it works.
3. Interventional Procedures guidance does not cover whether or not the NHS should fund a procedure. Decisions about funding are taken by local NHS bodies after considering how well the procedure works and whether it represents value for money for the NHS.
1. The National Institute for Health and Care Excellence (NICE) is the independent organisation responsible for providing national guidance and standards on the promotion of good health and the prevention and treatment of ill health.
2. NICE produces guidance in three areas of health:
- Public health - guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector
- Health technologies - guidance on the use of new and existing medicines, treatments, medical technologies (including devices and diagnostics) and procedures within the NHS
- Clinical practice - guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS
3. NICE produces standards for patient care:
- Quality standards - these reflect the very best in high quality patient care, to help healthcare practitioners and commissioners of care deliver excellent services
- Quality and Outcomes Framework - NICE develops the clinical and health improvement indicators in the QOF, the Department of Health scheme which rewards GPs for how well they care for patients
4. NICE provides advice and support on putting NICE guidance and standards into practice through its implementation programme, and it collates and accredits high quality health guidance, research and information to help health professionals deliver the best patient care through NHS Evidence.
This page was last updated: 14 December 2010