The top priority, determined after a consulting with hundreds of people with adolescent and young adult cancer (AYA) from across Canada, was addressing delays in diagnosis. The rest of the priorities span biomedical, psychosocial, financial and health-system challenges, representing a full spectrum seldom seen in cancer-research agendas.
The findings were published in the British Medical Journal.
Dr. Perri Tutelman , PhD, an assistant professor in the Department of Psychology at the Faculty of Arts , has been conducting research to understand, address, and pave the way for future AYA cancer research.
Together, with co-leads Dr. Fiona Schulte , PhD, and Chantale Thurston, the group began an intensive, collaborative process to explore what Tutelman says is an often overlooked population for research and research funding.
"There is increasing recognition that 15-to-39 year olds living with cancer have unique needs that are often overlooked," says Tutelman. "We undertook this project to work with the AYA community and understand what is most important to them and what the future of research in this area should focus on."
An often-overlooked population
The researchers say more attention and funding is typically pointed at both younger and older populations of cancer patients, yet AYA patients often have worse outcomes. They add a contributing factor is that research often happens independent of the community, resulting in priorities that skew toward the interests of researchers or industry, and often are misaligned with the priorities of those with lived experience.The researchers choose the James Lind Alliance (JLA) method, a gold-standard, patient-first approach to research. Working together with JLA advisor, Tamara Rader, they established a 16-member national steering group representing patients, caregivers and clinicians across Canada. The steering committee faced the sizeable task of sifting through a list of 1,916 potential research questions gathered from a diverse group of nearly 300 AYA community members from across the country.
"We really wanted to make sure national priorities aren’t just coming from one perspective," says Thurston. "Our goal was to bring a huge range of voices to the table - covering as many cancer types and provinces as possible, and across all’age groups. By representing the full diversity of the Canadian landscape, we ensure that no young person’s unique experience is left out of the conversation."
To determine the final 10 priorities, they then brought together 23 people with lived experience of AYA cancer for a two-day national workshop. Consensus was eventually achieved as the diverse group shared their perspectives and worked through their preconceived ideas of what the No. 1 priority should look like. Addressing delays in diagnosis was chosen unanimously.
Approaching this research from Tutelman and Schulte’s perspective of psychology has been valuable. They have been trained to listen to what’s important to patients and families. Hearing people’s experiences helped them uncover and address their needs.
"This research epitomizes UCalgary’s vision of creating impact through collaborative and community engaged research and scholarship. I am confident of the significant impact this work will have (and is already having) in our community and beyond," says Schulte.
The collaborative nature of this research project was a success beyond the scope of the research. It engaged the community in an authentic way and is recognized as a model of priority setting partnerships (PSPs).
"Dr. Tutelman’s work is a model for other PSPs in the way she committed to the JLA principles of inclusion, transparency and adding to the evidence base of research with adolescents and young adults with cancer," says Rader.
What happens now
With these top 10 priorities established, the researchers are already beginning to shape new AYA cancer-care strategies. "We’re in the process of redesigning what adolescent and young adult cancer care is going to look like within Cancer Care Alberta," says Tutelman.Some of the clinicians and researchers involved in the steering group have taken these top 10 priorities and have started to action them in their areas of expertise. One, a palliative medicine physician, has started a whole program of research on priority No. 5, which addresses end-of-life care.
"We’ve heard what’s most important to you," says Tutelman. "Now, we’re going to do everything in our power to make sure that we research these questions in the most rigorous way, so that the findings will eventually improve the care for you, for your loved ones, and for the patients coming in the future."
UCalgary has demonstrated what patient-centred research can look like by giving voice to the often-overlooked community of AYA patients, caregivers and clinicians, under a transdisciplinary model.
The impact of this work is extending beyond Alberta, informing national conversations about dedicated AYA funding and priorities. This work, started here at UCalgary, ensures that AYA voices are heard and continue to guide the future of cancer care.
