The Button Family Initiative for Pediatric Psychosocial Oncology & Survivorship
How your gift supported critical research and education in 2023-24
“The story doesn’t end when cancer treatment does,” says Dr. Fiona Schulte, PhD, associate professor in the Department of Oncology at the University of Calgary’s Cumming School of Medicine.
And, thanks to the generosity of the many donors like you who support The Button Family Initiative for Pediatric Psychosocial Oncology & Survivorship, Schulte and her team are following that ‘story.’
They’re generating much-needed evidence about the long-term physical and psychological difficulties experienced by young survivors of cancer — including pain, sleep, social and quality of life issues. Schulte is leading the way in this important research impacting children, adolescents and young adults diagnosed with cancer.
“Despite impressive cure rates among youth who are diagnosed with cancer, by the age of 50 years, almost 100 per cent of these survivors will experience at least one chronic health condition,” she says.
Despite impressive cure rates among youth who are diagnosed with cancer, by the age of 50 years, almost 100 per cent of these survivors will experience at least one chronic health condition.
Dr. Fiona Schulte, PhD
Associate Professor in the Department of Oncology
Enhancing quality of life for young survivors
As a result of Schulte’s significant contributions to the evidence demonstrating these long-term difficulties, she has been tasked with leading international initiatives to develop guidelines for the long-term surveillance of mental health difficulties among children, adolescents and young adults who have been diagnosed with cancer. Her efforts have led to accelerated interventions and enhanced quality of life for survivors of cancer and their families. In 2023, her laboratory began a trial to test whether an eight-week Web-based cognitive behavioural treatment for chronic pain—WebMAP—will demonstrate a reduction in pain in survivors with ongoing pain.
Schulte works entirely in partnership with patients who have lived with cancer. Her lab is supported by an advisory council of patient and family partners and guided by terms of reference that ensures people with lived experience are present to help in the research process.
“Patient and family partners attend my lab meetings once a month to work with my team at various stages of research development and design,” she says.
Schulte’s team is also working on a priority setting partnership for adolescents and young adults with cancer that is guided by the James Lind Alliance (JLA). JLA is considered the gold standard for establishing patient-oriented research agendas due to its rigour and focus on equity. The goal is to establish a ‘top 10’ list of research priorities for adolescents and young adult research in Canada that will be primed for action by researchers and funding agencies.
The Button family
2023-24: a year of achievements
Schulte’s many collaborations allow for continued growth of Alberta’s long-term survivor clinic database and development of a patient-focused app to support them. In addition to collecting hundreds of patient-reported outcomes, the research team is working to link these outcomes with other health databases that will allow them to look more deeply into the overall health of long-term survivors. The team has identified the priority components for an app and wrote a paper (under review, not yet accepted) that identifies them: connections, education and information, engagement, personalization and resources.
The team is also leading critical work that seeks to understand how to better engage under-represented youth in cancer research. While this work focuses on racialized youth and youth who identify as sexually or gender diverse with a diagnosis of cancer, the implications are far reaching with applications for research involving under-represented youth outside Canada and beyond cancer specific research.
Over the course of 2023-24, Schulte and her team published 18 papers sharing their research, including an article in Cancer, the interdisciplinary journal of the American Cancer Society and
one of the premier journals in the field. The paper was named one of the top 10 per cent of those published in the field.
Schulte’s expertise is well-recognized nationally. She was named co-lead of the “Advancing Childhood Cancer Experience, Science and Survivorship (ACCESS)” National Consortium for the Psychosocial and Survivorship task force. Established in January 2023 following a $24 million investment by the CIHR, ACCESS will set a foundation for co-ordinated psychosocial and survivorship research and knowledge mobilization, as well as training for the next generation of childhood cancer researchers in Canada.
Schulte is co-investigator on a $5.4 Million Patient-Centered Outcomes Research Institute (PCORI) grant— the first PCORI grant ever awarded to UCalgary, recognizing the team’s leading expertise in the field. PCORI is the leading funder of patient-centred comparative clinical effectiveness research in the U.S. Schulte leads the team studying how quality of life is impacted.
Schulte continued to share her knowledge and work when she delivered the keynote at the Pediatric Oncology Group of Ontario (POGO) annual meeting “Forty years of progress: A reflection on the past, present and future of psychosocial oncology.”
UCalgary recognized Schulte with an Outstanding Academic Achievement Award (awarded to only 16 per cent of faculty members).
Schulte’s trainees are also rising stars, with two research colleagues receiving important awards:
- Post-doctoral fellow Dr. Perri Tutelman received the prestigious Alice Wilson Award from the Royal Society of Canada (RSC). She works directly with children, adolescents and young adults diagnosed with cancer, providing support, understanding their priorities and developing psychosocial interventions to improve their well-being.
- UCalgary awarded Dr. Sharon Hou, post-doctoral fellow and registered psychologist an Equity, Diversity and Inclusion post-doctoral award. Her research into advancing diversity and health equity in children and their families’ health and well-being aims to identify equitable and inclusive ways to support the health care and psychosocial needs of under-represented and underserved populations of children and families.
Thank you!
An enormous thank you to all those who support the Button family’s vision of better mental health for children and young people diagnosed with cancer. As we mark more than a decade of excellence powered by philanthropy at the Charbonneau Cancer Institute and celebrate the 10-year anniversary of Geoff Cumming’s transformational gift to our medical school, the generosity of our community continues to propel leading research in pediatric psychosocial oncology. Together, we’re improving the lives of countless young survivors of cancer.