New Research Agenda Targets Urgent Needs in Adolescent and Young Adult Cancer Care
Researchers and advocates have released a national agenda detailing the top 10 priorities for adolescent and young adult cancer research in Canada, aiming to address significant gaps in diagnosis, treatment, and long-term survivorship care for this underserved patient population.
Highlights
- •Nearly 10,000 adolescents and young adults were diagnosed with cancer in Canada last year.
- •This age group often faces unique biological and psychosocial challenges leading to poorer survival outcomes.
- •Less than 0.5 percent of Canadian cancer research funding is dedicated specifically to this demographic.
- •A new national agenda identifies diagnostic delays as the top priority for future research.
The incidence of cancer among adolescents and young adults in Canada is rising, with nearly 10,000 new diagnoses recorded last year. Often described as a forgotten generation, this demographic—spanning ages 15 to 39—has historically faced significant gaps in specialized care and dedicated research. Because this phase of life is characterized by critical milestones like career building and family planning, an unexpected diagnosis can have profound, long-lasting consequences. Adolescent and young adult cancer patients are currently identified as a highly underserved community within the national healthcare system.
Recent data indicates that the biological and psychosocial needs of these patients differ significantly from those of children or older adults. Studies show that this cohort frequently endures greater psychological distress, more severe physical symptoms, and poorer overall survival rates compared to other age groups. Despite these challenges, less than 0.5 percent of total cancer research funding in Canada has been specifically allocated to this group over the past two decades. This research gap necessitates a shift toward patient-driven priorities to effectively improve long-term outcomes.
Establishing Patient-Driven Research Priorities
Historically, a disconnect has existed between the agendas of the scientific community and the needs of those with lived experience. Research initiatives often emphasize pharmacological trials significantly more than what patients, caregivers, and clinicians prioritize. This mismatch leads to inefficient allocation of resources and limited improvements in clinical practice. To address this, clinical psychologists partnered with Chantale Thurston, a prominent patient advocate, to lead the AYA Cancer Priority-Setting Partnership (PSP). This national effort brought together patients, caregivers, and medical professionals to identify the top 10 most urgent areas for adolescent and young adult cancer research.
The established priorities encompass a broad range of concerns. The primary question identified by stakeholders is why diagnostic delays occur so frequently for young people and how these processes can be refined. Other critical areas include enhancing access to comprehensive healthcare services, improving fertility and family planning support, addressing long-term mental health, and understanding the financial impact of the disease. Furthermore, the agenda highlights the importance of managing transitions off treatment and supporting the challenges of survivorship, such as returning to work or education.
The development of these priorities followed a rigorous process inspired by the James Lind Alliance, emphasizing inclusivity and equal involvement among all stakeholders. With these top 10 research goals now clearly defined, the focus must shift toward implementation. This requires coordinated efforts from funding agencies, scientists, and the advocacy community to translate this national agenda into tangible policy changes and new treatment strategies. By aligning research directly with the lived experiences of adolescent and young adult cancer patients, the healthcare system can work toward achieving more equitable and effective outcomes for this vulnerable group.
