As a psychosocial oncology researcher and clinician, Dr. Perri Tutelman works to improve adolescent and young adult cancer care in Alberta.
By Olivia Piché
Photographs by Jared Sych
Dr. Perri Tutelman has always known she wanted to work with children. She began volunteering with young people at the age of 15.
“I got to know a lot of kids during that time, and I really developed a passion for working with kids and families who were experiencing life-threatening illnesses like cancer,” Tutelman says. “To be a part of their journey and help support them, specifically with their psychosocial needs in addition to the medical care, is really what inspired me to pursue a career as a psychologist in the cancer care setting.”
Tutelman, a clinical psychologist and assistant professor at the University of Calgary, is now also the co-lead of the Adolescents and Young Adults Cancer Priority Setting Partnership (AYA Cancer PSP), a project she conceived that identifies the key areas of research needed to improve care for adolescents and young adults (AYA) with cancer in Canada.
In 2023, Tutelman pitched the project to Chantale Thurston, a young cancer survivor and chair of AYA CAN, who was thrilled to help. From there, they put together a team, including Dr. Fiona Schulte, a psychologist who works with AYA patients with cancer, as a co-lead, to begin the work. The project consists of a steering committee of 16 individuals from different backgrounds — patients, caregivers, family members, cancer patient navigators and clinicians — who share their lived experiences, a fairly uncommon approach in research.
“Generally speaking, the research that gets done in the medical and scientific fields is decided by researchers and industry,” says Tutelman, whose research lab is at the Arthur J.E. Child Comprehensive Cancer Centre. “What’s really missing is the patient’s perspective on what’s important to be researched. Very little research that gets done is actually directed by the people that it’s intended to benefit. And that’s a problem because we know that patient priorities often differ from those of researchers and the pharma industry.”
Tutelman completed a postdoctoral fellowship at the University of Calgary in 2024, where she specialized in psychosocial oncology as a researcher and as a psychologist, working exclusively with clinical AYA patients through Cancer Care Alberta. There, she saw the unique factors that affect this demographic facing cancer and first had the idea to start AYA Cancer PSP to help address them.
A unique demographic.
Canada recognizes people aged 15 to 39 as AYAs. This age group includes people studying at school, starting their careers, entering partner relationships, buying their first homes, considering having kids or raising young children.
“Cancer really throws a wrench into all of those plans,” says Tutelman. Of course, cancer changes the course of anyone’s life, but for younger people, certain conversations play out differently from those of the general adult population. A lot of people are uncomfortable talking about the potential of death in young people, explains Tutelman. Discussions surrounding what young people want or don’t want in end-oflife care are often missing. Legacy-making looks different for AYAs, as do finances, fertility and other aspects of life that cancer impacts. With AYA Cancer PSP, Tutelman hopes to address these differences.
“Nobody wants to go through a cancer experience, but we want to help AYAs have an experience where they feel supported and where they feel that they can move forward and live beyond cancer, to become contributing members of society and to live out some of the hopes and dreams they’ve had, whether it’s in school, a career or having a family.”
“It’s not enough to provide the medical care. We also need to offer psychosocial resources and recognize the very significant and real impact that cancer has on the lives of all patients, particularly young people.”
First steps.
In November 2024, after 18 months of work and research, which consisted of two national surveys and a two-day priority-setting workshop, the AYA Cancer PSP reached a consensus on the top 10 priorities for AYA cancer research.
All 10 priorities ask questions about ongoing issues and gaps in care these patients face. The hope is finding the answers that will lead to protocols for improved care. The research priorities range from highlighting the impacts of cancer on youth mental health, finances and fertility to end-of-life care, transitioning back to work during early-career stages and life beyond cancer. AYA Cancer PSP also prioritizes improving treatment and care, such as the diagnostic process, access to healthcare services, screening for earlier detection and monitoring for recurrence, and the development and implementation of treatments.
“These questions should be what the next 10 to 20 years of AYA cancer care focuses on in Canada because this is what the community has told us is most important,” says Tutelman. “The hope is that we have a healthcare system that is responsive to the needs of AYAs. We want to see improved outcomes in terms of survival, late effects [health problems that don’t show up until months or years after treatment] and satisfaction. We want to look at if patients are feeling more satisfied, more supported, less anxious and if they feel like they can navigate the system.”
Prioritizing the research fields was the first step on a long journey toward clinical change and more excellence in healthcare, particularly for the younger generation. Change in the healthcare system demands a lot of time and research, but Tutelman is in it for the long haul.
“This is a long game, but this is where we need to start because if we continue doing research that has not been deemed important by patients and families, then we’re missing the mark.”
