Determining the effectiveness of treatment

10 January 2022

A research team at Queen’s University Belfast, led by Dr Lisa Graham-Wisener and Dr Paul Toner, aims to develop a core set of outcomes to determine the effectiveness of treatment for adolescents and young adults with adolescent idiopathic scoliosis (AIS; scoliosis without a known cause). The study (called ‘SPINE-COS-AYA’) is funded by the British Scoliosis Research Foundation.

The effect that a treatment has on an individual is measured on the basis of predefined outcomes’ Some examples of outcomes for scoliosis treatment may include ‘pain’ (ie, the amount of pain a patient has before and after treatment) or ‘spinal curvature’ (ie, the Cobb

angle before and after treatment). When researchers and healthcare professionals use different outcomes to measure if a treatment is successful, it makes it difficult to compare findings across different research studies. This means that some research evidence is not as high quality as it could be and as a result patients and healthcare professionals may be unsure which treatment is most effective.

The SPINE-COS-AYA project aims to develop a minimum list of outcomes for researchers and healthcare professionals to use when assessing if a treatment has worked for a young person with AIS (a ‘core outcome set’, or COS). If researchers and healthcare professionals across the world are using the same outcomes to measure if a treatment has worked, they can more easily compare and combine their findings. For example, this could mean it is easier to compare

findings from a clinical trial of a new surgical approach to findings from a clinical trial of an already established surgical approach. Over time, with all researchers and healthcare professionals using the core outcome set this will improve the quality of the research evidence base and in turn, treatment outcomes for young people with AIS.

As well as ensuring that researchers and healthcare professionals are using the same outcomes to measure treatment success, it is also essential that they are measuring wha are judged to be the most important outcomes. In the SPINE-COS-AYA research project, the researchers are interviewing the individuals best placed to know what outcomes are most important - young

people with AIS, their parents, and a range of healthcare professionals. Through these interviews, the researchers are interested in finding out what is important to each of these groups, and why it is important. Many core outcome sets for assessing treatment for other clinical populations have been developed without the input of young people, with researchers speaking only to healthcare professionals and sometimes to parents. The current research project places young people centrally in the core outcome set development process, recognising that they are best placed to speak about what is important to them. To help ensure this, the team have also set up a Young Person Advisory Panel. The panel is made up of young people with AIS living in Northern Ireland, who are helping to inform the research to ensure it meets the needs of young people with AIS.

At the end of the SPINE-COS-AYA study, the researchers will have a long list of important outcome areas that have been identified by young people with AIS, their parents, and healthcare professionals. The researchers will then apply for more funding to conduct an international survey, to provide agreement on which outcomes from this long list should be measured by researchers and healthcare professionals appraising surgical or conservative treatment such as bracing for AIS.

 

How you can help

The research team are currently interviewing young people with AIS (within 5 years of surgery or bracing), their parents, and healthcare professionals. There has been great interest so far, but we need more young people and parents to take part. If you are a young person or the parent of a young person who has received care (surgery or bracing) from the Northern Ireland Regional Scoliosis Service in the previous 5 years, please consider helping with the research by taking part in an online or telephone interview. Young people will be given a £10 Amazon voucher as a thank you for taking part.

There is more information about the study available on the study website at https://cutt.ly/Qubscoliosis, or by contacting the research fellow Dr Julie McMullan who is undertaking the interviews. Julie can be contacted via email (Julie.mcmullan@qub.ac.uk) or by phone (07919511950).

If you do not live in Northern Ireland but would like to be kept up to date with future stages of the research, please consider following the team on one of their social media pages - Facebook (@qubscoliosis), Twitter (@qubscoliosis), or Instagram (@qubscoliosis). We hope to involve young people across the UK and internationally in future research, so please do follow us.

The goal of this research programme is for treatment decisions in the future to be based on better quality evidence, which will lead to better treatment outcomes.

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