Dr Nick Jones, Academic Clinical Fellow, Nuffield Department of Primary Care Health Sciences, Oxford
SAUK has recently been taking part in the first ever James Lind Alliance (JLA) Priority Setting Partnership (PSP) in scoliosis. The idea of the PSP is to bring together patients, their families and carers, members of the public and healthcare professionals to identify the current priorities for scoliosis research. The process first involves creating and sending out a survey to seek feedback from as many people as possible who might be interested in taking part. Then the team running the JLA project draw together all the survey responses as well as previous research to create a list of top questions that need to be answered. This final list can help guide researchers and funding bodies to set up exciting and relevant new projects.
Now that the scoliosis PSP is complete, SAUK would like to share the top twelve findings with you and also provide a brief overview of what is known on these topics from previous research. Six of the questions will be covered here and the remaining six in the next edition https://www.ouh.nhs.uk/research/patients/priority-setting-partnerships/scoliosis/default.aspx
1. What are the best strategies for reducing or preventing the curve from getting worse, combining treatment and self-management approaches to avoid the need for surgery?
There are a range of scoliosis-specific forms of physiotherapy that can have beneficial effects such as helping with people’s breathing or improving overall quality of life. There is some suggestion that physiotherapy can help in slowing the progression or even improving the curvature of the spine in adolescent idiopathic scoliosis (AIS). The positive outcomes from recent trials has led to exercise being more strongly advocated as a treatment option in AIS. A range of different forms of structured physiotherapy have been tried in these trials, including the Scientific Exercises Approach to Scoliosis (SEAS) approach, the Schroth intensive exercise programme and a Global postural re-education (GPR) intervention. However, there remains uncertainty about this evidence, which tends to come from small studies and more research is needed to be sure of the benefits and when physiotherapy might be recommended treatment. Which therapy is best also remains uncertain and it may be that doing some structured physiotherapy is as important as the particular type. Physiotherapy is usually done on an outpatient basis over several weeks, but some centres do arrange intensive inpatient courses in certain circumstances.
Another important treatment option is bracing, which involves people wearing a support to help encourage the spine to grow as straight as possible. This is usually recommended for children or adolescents during growth spurts to help the spine grow as straight as possible at this important time. Braces are worn for a certain amount of time each day but should not limit what a patient is able to do wearing them. Different types of brace are available. Cast braces are usually only used in babies up to three years old. Older children tend to have either a light plastic rigid brace or a more flexible non-rigid brace. Lots of factors decide which type of brace is best, such as comfort, activity levels or degree of spinal curvature. The evidence for which type of brace is best is unclear. Some studies do support using more rigid braces, but it seems there are a range of other factors that are likely to be equally important to the success of the approach, such as the type of scoliosis, and increased compliance with wearing the brace.
Physiotherapy and bracing represent the main strategies for preventing spinal curvature worsening and avoiding surgery in AIS and some early onset forms of scoliosis. There are other potential treatments, including shoe inserts, specific diets or homeopathic medicine, but at the current time there is little evidence to prove any of these definitely help with scoliosis. Further research could help in terms of understanding which type of physio or type of brace work best and also in identifying other self-management strategies to help people avoid surgery.
2. How is quality of life affected by scoliosis and its treatment? How can we measure this in ways that are meaningful to patients?
The impact of scoliosis on quality of life varies as widely as the condition itself and is not necessarily in direct proportion to the severity of the spinal curvature or a patient’s age. Previous studies have shown there can be both physical and psychological effects. Physical symptoms may include pain issues or difficulty with everyday tasks such as washing and dressing. Scoliosis has also been linked to depression, suicidal ideation, concerns of body image and worries about relationships with peers. Corrective treatment with surgery or bracing may help improve these symptoms but for some treatment may actually contribute to feelings of being different from others or feeling more isolated.
Understanding how scoliosis affects quality of life and what can be done to improve this is a vital research goal. To capture the impact of scoliosis and be able to measure the effectiveness of interventions, standardised tools for measuring quality of life are needed. Usually these consist of quality of life surveys, which may be either general for any health condition or specific to scoliosis. The advantage of the general questionnaires, such as ‘EQ5D’ or ‘SF36’, is that they can give quality of life measures that are comparable to other health conditions. Government bodies such as the National Health Service (NHS) or the National Institute for Health and Care Excellence (NICE) can then use this information to help decide where investing money in healthcare might have the most benefit for patients. Scoliosis specific questionnaires are available and can give more detailed insight into the condition. These include the Scoliosis Research Society Outcomes Instruments (SRS-22 and SRS-24) and the Scoliosis Quality of Life Index (SQLD). Some researchers will also undertake qualitative research to explore the impact of scoliosis on quality of life at a greater depth than short surveys are able to capture. This might involve in depth interviews, focus groups or spending time living with people with scoliosis or joining them in clinic visits to understand their life better.
3. Could surgical procedures be improved to become less invasive, reduce scarring and increase flexibility?
Surgery for scoliosis has tended to focus on either spinal fusion or insertion of extendable rods that can help support the growing spine. Spinal fusion remains the gold standard treatment. There is a constant drive for innovation in surgery, with the aim of improving outcomes and reducing the amount of invasive surgery required. One such innovation is the option of magnetically controlled growing rods – the MAGEC system – meaning a single set of rods can now be inserted and then magnetically extended over time, rather than patients having to undergo repeat surgery to extend the rod length. Another technique that has gained recent attention is Vertebral Body Tethering (VBT). The idea is that by tethering certain parts of the vertebrae together, growth in other parts of the spine will be encouraged and this can lead to reductions in spinal curvature without the need for spinal fusion. Short-term outcomes have been promising in some patients but there is a lack of longer-term data at present. This means the treatment is not currently funded by the NHS, although it is available at St George’s Hospital in London on a fee-paying basis. Further long-term studies are important in this area to make sure the best and safest surgical option can be offered to everyone on the NHS.
4. What are the long-term outcomes and side-effects of surgery?
The results of any form of surgery vary among individuals but, in general, spinal fusion is associated with good long-term outcomes for idiopathic scoliosis in terms of improved spinal balance and reduced curvature. Patients can expect a significant improvement in curvature regardless of the approach used for surgery with associated cosmetic benefit. Although the curvature may worsen a little over the course of years following surgery, most patients still have a significant long-term improvement compared to pre-operatively. Repeat surgery is unusual but does sometimes need to be done in between 3-10% of cases.
Side-effects in the short-term may relate to the operation itself or the anaesthetic. These include pain, stiffness, or a temporary reduction in mobility. Spinal fusion operations last several hours so there is risk of low blood pressure, bleeding or infection. These are almost always treatable but may affect the length of stay in hospital and recovery time. Longer term, patients who have undergone surgery commonly experience mild low back pain and usually have reduced flexibility in the lumbar spine. The risk of serious complications related to the surgery are low. There is around a 1 in 100 risk of developing a surgical infection, injury to the spinal cord occurs in 1 in 1000 and significant bleeding during the operation is rare. Research can help explore the potential benefits of different approaches to surgery and their relative outcomes and risks across different populations, such as those with idiopathic compared to degenerative scoliosis. In the future, this might enable more individualised treatment advice and better insight into long-term prognosis.
5. How likely is scoliosis to get worse over time, either with or without treatment? Should people be monitored?
How scoliosis changes over time depends in part on factors such as what type of scoliosis someone has and whether they have other problems with their health. Two of the most important factors that suggest scoliosis may get worse over time are when scoliosis develops at an early age – particularly before puberty – and when there are greater degrees of spinal curvature. Up to 10% of idiopathic scoliosis may improve without treatment and a further 25-75% remains unchanged. For some people, this means it is reasonable to watch and wait, with regular medical appointments to monitor for any change rather than starting treatment early. Where scoliosis is related to a neuromuscular condition, such as Duchenne muscular dystrophy or cerebral palsy, the progress of these conditions will have a big impact on future changes in the spinal curvature. Similarly, in the elderly osteoporosis or arthritis can contribute to scoliosis. If these can be treated or if muscle strength can be improved through exercise, it might be possible to prevent worsening of the scoliosis.
6. What is the best method of imaging scoliosis that also reduces exposure to radiation?
In general, plain X-ray continues to be used to measure degree of spinal curvature in scoliosis. There are a number of reasons for this: Radiation doses in X-ray are low compared to CT scan, the quality of spinal images is usually good, X-ray is cheap and readily available across the NHS and X-ray may be better tolerated by people who are claustrophobic. CT and MRI scans are used at certain times when extra information is needed. For example, they can be helpful in giving more detailed imaging at the time of diagnosis to look for any other underlying disease which may be causing the scoliosis. They are often used pre-operatively to help plan for surgery and evaluate the outcome of an operation. Another form of imaging is an EOS device, which is relatively new and can create whole-body, high resolution 3D images whilst limiting radiation doses. Again it is often used in the pre-operative planning stages and post-operative follow-up. The best imaging method therefore will always depend on the reason the imaging is needed, but advances in technology are helping in providing more accurate results and often simultaneously reducing radiation exposure.
Funding
This Scoliosis Priority Setting Partnership was funded by the British Scoliosis Research Foundation (BSRF) and supported by the National Institute for Health Research (NIHR), and Oxford Biomedical Research Centre (BRC).
