Evaluating specialist care for young people with cancer was identified as a research priority by the NCRI Teenage and Young Adult & Germ Cell Tumours Group following the National Institute for Health and Clinical Excellence (NICE) recommendations that teenagers and young adults should receive age-appropriate care.
At the time of these recommendations, the evolution of cancer services for teenagers and young adults was primarily driven by patient advocacy groups and some clinicians. Still, research evidence was needed to support the NICE guidance and support guidance revisions.
The rationale was that young people aged 13-24 with cancer, alongside their cancer treatment, require specialist care, which considers how their physical and mental maturity is different from older people. In England, some young people receive care from specialist teenage and young adult cancer centres that cater to these needs. However, not all young people receive all or any their care in a specialist teenage and young adult cancer centre.
The BRIGHTLIGHT study
The BRIGHLIGHT study was a ground-breaking study that aimed to answer the question: ‘Do specialist services for teenagers and young adults with cancer add value?’ It is to date the largest study of young people aged 13-24 years with cancer worldwide.
The NCRI Teenage, Young Adult and Germ Cell Group was instrumental to BRIGHTLIGHT. The study originated from the Health Services Research Subgroup, and without the platform provided by the Group to discuss and develop ideas, BRIGHTLIGHT would not have come to fruition.
Overall, the study showed that specialist teenage and young adult cancer care takes time to develop within a service. Overall, quality of life was higher for those who received no specialist care. Still, young people may have benefitted from receiving all of their care in a specialist centre due to faster rates of quality of life improvement compared to those who had no specialist care or some specialist care. The group has secured funding for further research to determine if the model of care in 2021 would produce similar results than the model in 2012-2014. This research is important as one of the findings is that the culture of teenage and young adult specialist care takes time to develop and many of the specialist centres were embryonic at the time of BRIGHTLIGHT recruitment which was 2012-2014.
Challenges in recruiting young people to cancer research
One unexpected problem faced by BRIGHLIGHT researchers was the recruitment of teenagers and young people to the outcome study. Young people are unique and required communication and recruitment tools tailored to them. The study was designed to maximise recruitment opportunities for young people based on some previous work by the teenage, young adult and germ cell research group. Despite this, recruitment was lower than anticipated, so the study required a no-cost extension and reduction in the original sample size.
The recruitment issues to the BRIGHTLIGHT Cohort were well publicised, and the NCRI Teenage, Young People and Germ Cell Group played an essential part in discussing potential interventions with members recruiting to the study and publicising in their own institutions and networks.
A key method used to overcome these problems was the involvement of teenagers and young adults in the research. The BRIGHTLIGHT Young Advisory Panel (YAP), work as co-researchers, consultants and co-authors on publications, and helping to develop recruitment materials and patient information. Involving young people greatly improved retention of participants in the BRIGHTLIGHT outcome study, improving retention from 30% to 58%.
Additionally, young people participating in the user involvement group benefit from gaining new skills and increased confidence. They also say it is good to do something positive out of something negative and to make changes for the next generation of young people with cancer.
Some of the YAP have used pieces of this work to contribute towards University modules, and many of them continue to contribute to research and cancer awareness.
I just want to say a massive thank you to the BRIGHTLIGHT team for bringing forth this opportunity of allowing young people to collaborate their ideas and opinions regarding research. The young girl that attended the BRIGHTLIGHT branding session in 2011 has evolved in ways I didn’t even believe I could, by having the opportunity to use to my voice to help shape how research for young people took place and the type of questions asked etc has really boosted my confidence and made me understand that my experience as an individual and my cancer journey can be really vital in helping bring better outcomes for other young people. Being a part of YAP has really given me a new direction and zeal and has helped positively shaped my career and business.
I’ve been part of the YAP since 2013 and have attended many workshops to support the BRIGHLIGHT team in various aspects of the study, from designing the questions in the survey to promoting the study to patients and the most appropriate way to approach them after diagnosis. We are always kept up to date with how the study is going and invited to attend additional workshops throughout the year with other healthcare professionals, allowing us to bring our own personal experiences with cancer to the table. I love being part of the YAP and feel I am doing my bit to improve cancer services for young people in the future, which is extremely important to me!
Supporting the involvement of young people in future research
The BRIGHTLIGHT researchers committed early on in their patient and public involvement experience to publish everything that they did, as one of the problems they encountered was a lack of evidence of how to effectively engage young people in research. They have published eight PPI peer-reviewed publications and presented at a number of international and national conferences. The researchers published ten years of Patient and Public Involvement in the open-access Research Involvement and Engagement journal so it is accessible to other researchers.
BRIGHTLIGHT patient and public involvement and engagement (PPIE) has also been recognised by the NIHR as an example of excellence and their blog was selected to represent the NIHR on International Clinical Trials Day 2017.
In response to the current Covid-19 pandemic, the BRIGHTLIGHT researchers have moved their PPI activities online. Two workshops have been completed using online platforms involving an artist to assist in the illustration of key concepts and results. The online workshops are more accessible to young people as they don’t require travel. Participants who joined included those who were self-isolating, currently abroad or could only join for part of the workshop due to work commitments. This would not have been possible if the workshop had been face-to-face in London.
The BRIGHTLIGHT researchers have integrated PPI into their expanding research portfolio which is core to the Health Services Research Subgroup.
The results of the study were published in the British Medical Journal in November 2020.