What adolescents and young adults with cancer want researchers to know

Cases of cancer in adolescents and young adults in Canada are increasing, with nearly 10,000 cases last year alone.

People between the ages of 15 and 39 have been referred to as cancer’s “lost tribe” and “forgotten generation,” as their unique needs and experiences have been largely overlooked and unaddressed in cancer research and care.

Adolescents and young adults are one of Canada’s top underserved cancer communities, according to the Canadian Cancer Society.

Because cancer is typically considered a disease of aging, most young people don’t anticipate a cancer diagnosis during what are the prime years of their lives. This developmental period is marked by key milestones, like pursuing education, establishing careers, exploring relationships and growing a family — all of which are significantly impacted by a diagnosis of cancer.

Emerging research suggests that cancer affects adolescents and young adults differently than children and older adults. Due to key biological and psychosocial differences, this cohort has poorer outcomes across the cancer trajectory. For example, adolescents and young adults often experience more physical symptoms, greater psychological distress and even worse overall survival compared to patients of other ages.

Yet, less than half of one per cent of all cancer research funding in Canada has been dedicated specifically to adolescent and young adult cancer, and this amount has not increased in almost 20 years.

Clearly, more research is urgently needed to improve outcomes for young cancer patients. But not just any research. What’s required is research in the areas that are most important to patients and their families.

Patient-driven research priorities

Studies have found that the research priorities of the scientific community are not necessarily what those with lived experience (for example, patients, caregivers and clinicians) find to be most important. For example, researchers and industry tend to prioritize pharmacological trials two to five times more frequently than patients, caregivers and clinicians do.

This mismatch in priorities contributes to what’s known as research waste and is one of the reasons for the limited impact of research on patient outcomes.

Conversely, when people with lived experience of a health problem are engaged equally in setting research priorities, the resulting research is more relevant, higher quality and may have more influence on practice and policy. But until recently, there has been no patient-driven research agenda for adolescent and young adult cancer in Canada.

A national research agenda for AYA cancer

As clinical psychologists with expertise in adolescent and young adult (AYA) psychosocial oncology, we partnered with Chantale Thurston, a patient advocate and chair of AYA Can – Canadian Cancer Advocacy, to co-lead the AYA Cancer Priority-Setting Partnership (PSP) project. The goal of this project was to bring together adolescent and young adult patients, their caregivers and clinicians from across the country to establish the top 10 priorities for adolescent and young adult cancer research in Canada.

The resulting top 10 priorities were recently published in the British Medical Journal Open. The questions that are most important to adolescent and young adult cancer patients are:

1. Why do many of them experience delays in cancer diagnosis and how can the diagnostic process be improved?

2. How can access to health-care services for adolescents and young adults (primary care, screening, psychosocial support, palliative care, follow-up care, rehabilitation, etc.) be improved before, during and after cancer treatment?

3. How to improve the development and implementation of novel treatments and testing protocols (for example, genomic testing) to improve outcomes for adolescent and young adult cancers, including for relapse and rare cancers?

4. How can fertility and family planning experiences and outcomes be improved for adolescents and young adults across the cancer continuum?

5. What are the end-of-life care needs and preferences of adolescents and young adults with cancer and their families, and what are the best ways to provide support for patients and families facing end-of-life?

6. What are the impacts of a cancer diagnosis on the mental health of adolescents and young adults and how can their mental health be supported across the cancer continuum?

7. What challenges do young people face with transitioning off treatment and living beyond cancer (for example, return to work/school, reconnecting with peers, rehabilitation) and how can they be better supported with these challenges?

8. What are the most effective methods to monitor for cancer recurrence and secondary cancers in adolescents and young adults?

9. What are the financial impacts of cancer on young people over their lifetime and how can these impacts be mitigated?

10. How to improve screening for and early detection of cancer in adolescents and young adults in the general population, and what are the outcomes associated with more inclusive screening practices?

The process

The AYA Cancer PSP project was guided by a method established by the James Lind Alliance to merge the priorities of people with lived experience of a health condition, their caregivers and clinicians. The process is founded on four principles: equal involvement, inclusivity, transparency and a commitment to contributing to the existing evidence base.

The process took about 18 months. First, we asked nearly 300 patients, caregivers and clinicians from across Canada to share their questions for research in adolescent and young adult cancer through an online survey.

After reviewing the questions and checking to see which ones had not yet been answered by research, we sent a follow-up survey, completed by 400 additional people, to create a shortlist of questions. We then hosted a final workshop where 23 patients, caregivers and clinicians worked together to narrow down the shortlist into the top 10 most important research priorities for adolescent and young adult cancer in Canada.

The top priority for future research is to understand why so many young people experience delays in cancer diagnosis.

The remaining priorities address a range of issues, including the development of new treatments, addressing mental health, considering end-of-life concerns and improving cancer survivorship. These topics reflect the most pressing issues for young people with cancer. They will pave the way for research that will benefit patients the most.

What comes next

Establishing the top 10 priorities is just the first step; we must now translate this national research agenda into meaningful action.

That will require collaboration between scientists to launch new research programs, investments from funding agencies in cancer research specific to adolescents and young adults and advocacy from the community. Together, we can ensure that the priorities shape the systems and investments and policies that determine real-world outcomes for adolescents and young adults with cancer.