“A supported transition from a child-centred healthcare system to an adult-oriented one can make a massive difference to a young person diagnosed with a brain tumour. It can improve their confidence in their ability to manage their health, their long-term health outcomes, and their health-related quality of life.”
Caitlin Gray is our Tom’s Trust Assistant Psychologist working alongside the Brainbow team at Addenbrooke’s hospital in Cambridge. Her role is to develop and facilitate a best practice pathway for those young adults transitioning from paediatric services to adult care. We caught up with Caitlin to find out more about her work and how her first six months in post have gone.
You are six months into your new role, how has that gone for you?
The last six months have been a great experience! I’ve really enjoyed seeing how all the different roles within the Brainbow multidisciplinary team come together to deliver quality patient care.
I have been learning all about transition. Transition refers to the gradual, purposeful, and planned shift from a child-centred healthcare system to an adult-oriented one. It is more than just a one-time event; it is a critical stage in which adolescents develop the knowledge and skills they need to independently manage their healthcare. This can come with lots of challenges for young people who have had a brain tumour, and unfortunately there isn’t an established pathway for supporting young people through this transition. We hope to develop such a pathway within Brainbow.
The first step to developing any form of psychological support is to look at the evidence, i.e. the research that has already been done. This ensures that we are providing support that has been shown to be beneficial, whilst avoiding practices based on guesswork, which may be ineffective or even harmful. Therefore, my focus for the first months has been on reviewing the research into the transition from children to adult healthcare services. I have focused on qualitative research describing patients’ experience of the transition process to identify barriers and facilitators to a successful transition. I have also been learning from how other healthcare services support their young people through transition. The findings from these projects will guide the development of our transition support pathway.
Alongside these projects, I have been gaining experience in cognitive assessment and formulation, and family therapy, under the supervision of psychologists whose posts were originally funded by Toms Trust. Gaining clinical experience with such a unique and varied group of young people has been a real privilege.
What is your focus for the next few months?
Over the next three months, my focus will be on continuing to work towards creating a really comprehensive evidence base for our transition support. Alongside looking at the wider research, we think it’s really important that we collect feedback about the transition process directly from our young people. We recognise that young people diagnosed with a brain tumour can have unique physical, learning and emotional needs that can affect their experience of transition, and we want to understand these better.
We hope to conduct interviews with young people who have recently moved to adult services, to ask what challenges they faced, what support they found beneficial, and what additional support they would have liked.
We also hope to collect feedback from young people about their experience of the transition support clinics that are already being offered at Addenbrooke’s. We have developed a questionnaire to explore how useful they found the support, what went well, what areas could be improved, and whether there were any unmet transitional needs. I will be attending these clinics to evaluate which components are effective or ineffective and how we can ensure that the support aligns with NICE best practice guidelines.
This feedback will allow us to incorporate our young people’s perspectives into the development of our transition pathway, ensuring that the support we provide is grounded in their experience and tailored to their unique needs.
Why do you think your role is so important?
Research has shown us that a successful transition can have a big impact on a young adult’s health, independence and quality of life. There are several factors that can make transition particularly difficult for young adults who have had a brain tumour. Firstly, they are often supported by multiple, separate medical specialties (e.g., endocrinology, neurosurgery, and oncology), making healthcare coordination more difficult. Secondly, brain tumours can have an impact on thinking skills, such as memory, thinking speed and attention, making it even harder to navigate a new adult healthcare system. Lastly, parents have, up until transition, usually played a huge role in managing the young person’s healthcare, for example, supporting with medication and arranging appointments. It can be difficult for both parents and young people to work through the shift in responsibility that comes with the transition to adult services.
Brain tumours and their treatment can also be associated with late effects that may appear months to years after remission and can have a big impact on quality of life. Providing effective support during transition will help young people to understand their diagnosis and treatment and continue with any long-term follow-up care. This ensures that they receive support as soon as they need it, improving their independence and long-term quality of life.
What difference will your role make to those you support?
A supported transition can make a massive difference to a young person diagnosed with a brain tumour. It can improve their confidence in their ability to manage their health, their long-term health outcomes, and their health-related quality of life. Whilst these physical health benefits are undeniably important, a supported transition goes even further than this. It also makes a massive difference to their emotional and social well-being.
The transition period is full of change, which can be overwhelming and scary; not only for the young person but for the parents who now have to take a step back. Support during this time can be really beneficial in reducing anxiety and promoting coping skills.
A key part of transition support is ensuring that the young person fully understands their tumour history, what needs they currently have, and what needs they may have in the future. This understanding allows them to make informed decisions about their future—whether that’s career planning, pursuing higher education, or simply understanding what kind of support they may need in everyday life. Such an understanding can lead to greater life satisfaction and an improved self-esteem.
Transition support also ensures the young person can communicate their health history and needs to friends, teachers, or employers in a way that feels appropriate for them. Transition support encourages the young person to self-advocate, so they can have reasonable accommodations that meet their needs, whether this is extra time for exams, changes to their work schedule, or more specialised support. We hope that supporting young people to advocate for themselves will ensure that they can continue to thrive in all areas of life.