The world of cancer research is often focused on the extremes: the very young and the very old. But what about the 'lost tribe' or 'forgotten generation' - those adolescents and young adults who find themselves battling cancer during what should be the prime years of their lives? This is a group that has been largely overlooked, their unique needs and experiences left unaddressed.
The Canadian Cancer Society has identified this demographic as one of Canada's most underserved cancer communities. And the numbers are alarming: nearly 10,000 cases of cancer in adolescents and young adults were reported last year alone.
What makes this particularly fascinating is the biological and psychosocial differences that set this cohort apart. Emerging research suggests that cancer affects them differently, leading to poorer outcomes across the board. Yet, despite these disparities, less than half of one percent of Canada's cancer research funding has been dedicated to this specific group, and that amount has remained stagnant for almost two decades.
So, what do these young cancer patients want researchers to know? What are their priorities when it comes to research and care?
As clinical psychologists with expertise in adolescent and young adult psychosocial oncology, we, along with a patient advocate, decided to find out. We co-led a project called the AYA Cancer Priority-Setting Partnership (PSP), bringing together patients, caregivers, and clinicians from across Canada to establish the top 10 research priorities for this demographic.
The resulting list, published in the British Medical Journal Open, highlights some critical areas of concern. For instance, why are so many young people experiencing delays in cancer diagnosis? How can we improve access to healthcare services and support for these individuals before, during, and after treatment? What about the development of novel treatments and testing protocols to improve outcomes for rare cancers and relapses?
These questions reflect the most pressing issues for young people with cancer. They speak to the unique challenges they face, from fertility and family planning to mental health support and the transition back to normal life post-treatment.
One thing that immediately stands out is the emphasis on improving the diagnostic process and access to healthcare services. This suggests a deep-rooted issue with the current healthcare system's ability to cater to the needs of this specific group.
From my perspective, this raises a deeper question about the nature of healthcare provision and research. Are we, as a society, truly listening to the needs of those affected by cancer? Or are we letting our own biases and assumptions guide the direction of research and care?
The AYA Cancer PSP project aimed to bridge this gap, ensuring equal involvement, inclusivity, and transparency in setting research priorities. By involving patients, caregivers, and clinicians in the process, we aimed to create a research agenda that truly reflects the needs of those it aims to serve.
Establishing these priorities is just the beginning. The real challenge lies in translating them into meaningful action. This will require collaboration between scientists, investments from funding agencies, and advocacy from the community.
Personally, I believe that by addressing these priorities, we can make a significant impact on the lives of adolescents and young adults with cancer. We can ensure that their voices are heard and that the research and care they receive are tailored to their unique needs.
In conclusion, this project highlights the importance of patient-driven research agendas. By listening to those with lived experience, we can create a more relevant, higher-quality research landscape that truly benefits patients. It's a powerful reminder that sometimes, the best way to find solutions is to ask those who are directly affected.
