Occurrence and impact
Scoliosis (curvature of the spine) is most common among children and adolescents, but can also occur in adults of all ages. About one in twenty young females have a curve by the time they reach skeletal maturity. That curvature often causes frequent and severe back pain, time off school, and badly affects education and future employment prospects.
Scoliosis is often associated with a wide range of other conditions, but in the majority of cases (85%) it has no known cause (ie, is ‘idiopathic’). Regardless of cause, scoliosis in children gets worse (this is known as progression) as they grow up, whilst in adults progression is associated with larger curves at skeletal maturity, neuromuscular conditions (notably cerebral palsy and various muscular dystrophies) and ‘syndromes’, such as Marfan’s and Neurofibromatosis Type 1.
Where uncertainties lie
Current diagnostic tests are intrusive and do not always describe the scoliosis accurately. Similarly, current treatment options can cause body image problems and still leave almost half of patients with curves that do not respond and may require surgery later. Approximately 2000 scoliosis operations are performed each year in England. That surgery has risks and complications, including infection and implant failure which can lead to further surgery. The most serious complication is spinal cord damage and paralysis.
In young people, there is much still unknown about the risks, benefits and costs of school screening, optimum screening methods and monitoring, optimum management for small curves, risk factors for progression and effective interventions for problems with body image. There are also uncertainties about long term benefits of scoliosis treatment (especially surgery), for example, whether correcting a spinal curve or preventing its progression in childhood has a long term impact on back pain, employability and lifestyle or when is best to intervene and with what device.
Where the Scoliosis Partnership fits in
The Scoliosis Priority Setting Partnership is essential in order to understand what areas for future research are most important to people with scoliosis, their carers and the health professionals who work with them.
The aims of the Partnership are to:
- Work with patients, carers and clinicians to identify uncertainties about the effects of scoliosis treatments
- Agree a prioritized list of those uncertainties for research
- Publicise the results of the Partnership
- Consider developing one or more of the resulting priorities into a research proposal
- Take the list to funding bodies to win support for new projects
This Scoliosis Priority Setting Partnership is funded by the British Scoliosis Research Foundation (BSRF) and supported by the National Institute for Health Research (NIHR) Oxford Biomedical Research Centre (BRC).