Lucy is looking to recruit some older-patient/parent involvement in a study of follow-up scans after brain tumours. Could you help? 

My name is Lucy Beresford. I am a health researcher at the University of York and am currently applying for a PhD to research the value of follow-up scans for children after they finish treatment for brain tumours. 

What is the research about?

When a child with a brain tumour finishes treatment, they have follow-up appointments with doctors to check that they are healthy, and that the tumour hasn’t come back.  Children often have brain scans as part of these appointments. These scans may spot a recurring tumour before the child shows symptoms. If a tumour is found earlier, it is believed that the child may have a better chance of surviving. However, the evidence that scans improve the chances of a child getting better treatment or living longer if a recurring brain tumour is spotted sooner is unclear.

Children with brain tumours are often part of clinical trials to investigate the effectiveness of new, promising treatments. These studies also collect information from the children after they finish cancer treatment, if they had scans and if the tumour came back. There are three studies running in the UK that have collected data on follow-up scans in different brain tumours. This data will be used to determine whether follow-up scans improve the chance of survival for children with brain tumours.

The PhD will answer three questions.

1. What do children who’ve had a brain tumour and their parents think about follow-up scans to detect cancer relapse?

Chemo ducks are available for most children undergoing cancer treatment. The stuffed ducks are used by the children to practice treatment procedures and are often a great source of comfort to children in hospital. Specialist play leaders will initiate a discussion about follow-up brain scans through imaginary play with the children and their Chemo Ducks.

Photos are a useful way for people to show how they feel about a particular experience. Older children will be asked to take photos of things or places that remind them of their follow-up brain scans. They will then be invited to share the images and talk about what the photos mean to them. This will help to start a conversation about older children’s experiences of follow-up brain scans.

Parents will be interviewed about their experiences and expectations of their child’s follow-up brain scans.

I will analyse the conversations from young children, older children and parents to identify the common feelings and experiences of routine surveillance imaging.

2. Is a child’s chance of survival better if a recurring brain tumour is found before the child shows symptoms?

I will use statistical methods to assess if a child is more likely to survive and if they survive longer when a recurring tumour is found on a scan before symptoms develop compared to after a child develops symptoms. Certain factors may increase the chances of a tumour coming back, such as the specific tumour type and whether it could be removed completely during surgery. Data from the three clinical studies will be used to answer this question.

3. Are follow-up scans value for money compared to the health benefits that they generate.

I will design a mathematical model to illustrate the prognosis of a child following their brain tumour treatment. I will use individual level data from three clinical studies to investigate a child’s chances of survival and their quality of life.  The extra costs of brain scanning will also be considered.

Patient Public Involvement

Patient and public involvement (PPI) in research is described as research that is conducted with people who have experience of a health condition. The involvement of patients and carers is important to ensure that the research will be relevant and meaningful to those who experience the condition first-hand. I intend to work with a PPI group throughout my PhD when designing the study, interpreting the results and sharing the findings.

The PPI group’s input will be important when designing the interviews, to make sure that that the questions are sensitive to the emotionally distressing topic area, and that they cover the key aspects of follow-up brain scans experienced by children and their parents. When interpreting the results, I anticipate working with the PPI group to identify key experiences and feelings that were talked about in the interviews.

It is important that the findings of my research are shared with the children and parents who experience follow-up brain scans. I intend to create a short children’s animation to explain the findings of the PhD and produce easy-to-read summaries and infographics for parents. I aim to work with the PPI group to make sure the summaries are engaging, relevant and easy to understand. I will use their knowledge of relevant support networks and social media pages to share my work.

If you are interested in being involved in this piece of research or wish to find out more information about the PhD, please don’t hesitate to contact me. My email address is [email protected]