From Ideas to Impact: Supporting Psychosocial and Survivorship Research

Psychosocial and survivorship research is a critical area that addresses life beyond diagnosis, from mental health to long-term quality of life. This important area is often underfunded and would benefit from additional support and capacity to meet the evolving needs of the pediatric cancer research and care community across Canada. ACCESS’ Small-Scale Funding For Exploring New Ideas For Psychosocial and Survivorship Projects was designed to give that work a starting point. The projects will provide the initial evidence, momentum, and credibility that researchers need to pursue larger opportunities down the line. Some of the most important breakthroughs often begin with a question someone finally had the support to ask.

“A modest pool of funding allows early-career researchers to undertake innovative projects and has the potential to count toward real impact in pediatric cancer research,” says Victoria Forster, a long-term survivor of childhood leukemia and Co-Lead, Psychosocial & Survivorship research theme, ACCESS.

Through this initiative, ACCESS is building education and training opportunities tailored to the pediatric cancer community. Pairing early-career researchers in psychosocial and survivorship with a national network of experts gives them hands-on experience and mentorship they couldn’t easily get. “By nurturing early-career scientists, we are supporting the next generation of researchers, helping to ensure the best possible future for children with cancer in Canada,” Victoria adds.

Three ACCESS-supported research projects show what initial support can unlock. The common theme for each project is patient partnership built into the work from day one, and a model designed to give early-career researchers ownership of their own ideas. “Small scale funding bridges a gap in accessibility, in line with ACCESS’ mission, and is an important long-term investment for pediatric cancer research in Canada,” says Victoria.

 

Exploring the Lived Experiences of Adult Survivors of Childhood Cancer with Chronic Pain: A Qualitative Examination

Chronic pain occurs in as many as 4 out of 10 long-term survivors of childhood cancer and has broad impacts on survivors’ functioning. Despite this, no studies have examined the lived experiences of survivors with chronic pain, including their experiences accessing pain management and within healthcare systems. Led by Jada Benedictson, Master’s Student, Clinical Psychology, Concordia University and Nicole Alberts, Associate Professor, Concordia University, this project explores how adult survivors of childhood cancer experience chronic pain across the survivorship continuum. The recruitment for the project began in April, interviews are being conducted, and the work is being done alongside two patient partners, Monica Henderson and Rachael Bull. Findings are already shaping Jada’s broader doctoral research, including a planned systematic review that will inform a future clinical practice guideline focused on chronic pain surveillance in childhood cancer survivors across the lifespan.

“ACCESS has played a critical role in helping our team address a meaningful gap in survivorship care,” says Jada. “Beyond financial resources, ACCESS has provided valuable opportunities for collaboration and knowledge exchange within the childhood cancer community.”

 

FORT-AeYA: Initial Adaptation and Usability Study

Fear of cancer recurrence is one of the most persistent psychosocial concerns among survivors, yet no intervention has been built specifically for survivors of childhood cancer. Led by Brooke Russell, a Clinical Psychologist and early-career researcher and Sophie Lebel, Clinical Psychologist and Professor at the University of Ottawa, the team adapted FORT, an existing adult-cancer therapy, into FORT-AeYA for survivors of childhood cancer aged 13 to 25. Working with 7 youth partners and a graphic designer, the team changed the content of the intervention and design of the participant workbook entirely. The adaptation phase is now complete, and a usability study with 9 participants has just launched with a plan to make the intervention accessible across Canada.

“Our youth partner team has informed on everything from the language and activities to the overall look and feel of the program,” shared Brooke. “These supports have helped us create a tailored intervention and accelerate progress for an evidence-based resource.”

 

Pilot Feasibility of Reducing Planning Target Volume (PTV) Margins in Radiotherapy for Children 

Radiotherapy is an important part of cancer treatment, but exposure to healthy tissues surrounding the tumour can lead to long-term side effects including neurocognitive and executive function impairment. Led by Sean Hassan, Radiation Oncologist, Arthur J.E. Child Comprehensive Cancer Centre and Derek Tsang, Radiation Oncologist, Princess Margaret Cancer Centre, the team is investigating whether treatment volumes can be reduced while safely targeting the tumour. The study is harnessing imaging from previous treatments to minimize unnecessary radiation and improving the long-term quality of life of childhood cancer survivors. The main phase of the project is complete, with new treatment plans created for all patients included in the study. Final analysis to determine the potential impact of reduced treatment volumes on patients is now underway. The team will prepare a manuscript for publication and present findings at international research meetings contributing to improvements in radiotherapy practice for children with cancer worldwide.

“We are incredibly grateful for the support of ACCESS in this project. The funding made it possible to complete the most challenging and time-consuming part of this project and will enable us to generate important evidence that could help make radiotherapy safer for children. We look forward to sharing our findings and using them to improve care for future patients”, Sean Hassan and Derek Tsang, on behalf of the project team.

The projects above demonstrate how small awards or seed funding can spark meaningful change. By receiving support to explore innovative ideas at their earliest stages, important psychosocial and survivorship projects have been able to take root, paving the way for future research, collaboration, and lasting impact across the pediatric cancer community.