About the Study
We know that many adults who have survived cancer experience worry about cancer recurrence, and that this worry can negatively impact mental health and day to day life. What we don’t know is if children and teens who have survived cancer experience the same worry, and if so, how it impacts them. One of the reasons we know so little about this worry for child and teen survivors of cancer is because we have no way to measure it. The purpose of this project is to develop a questionnaire specifically for children and teens to measure worry about recurrence. We hope that this will help us to advance research in this area, and ultimately, improve long-term wellbeing for our survivors.
About our Lived Experience Partners
Colette is currently completing her undergraduate degree in medical sciences at Western University. She is an avid advocate for pediatric cancer research and support for patients as a survivor of synovial sarcoma herself.
You can find Colette on Twitter @benko_colette
Dawn is the mother of incredible 8-year-old Ollie, a survivor of anaplastic large cell lymphoma who was diagnosed in November 2019, and the amazing Abby, who is 12-years old and was Ollie's stem cell donor. Ollie had multiple relapses in his central nervous system and went blind as a result. He is in remission and doing well post transplant. Dawn has become an advocate for pediatric cancer research and is pleased to be contributing to this study. She also serves on the Children's Hospital of Eastern Ontario (CHEO) Oncology Patient and Family Advisory Council.
You can find Dawn on Twitter @CDawnPickering
Scott is the father of the fabulous Isabella a.k.a Izzy Leone, survivor of acute lymphoblastic leukemia. Isabella was diagnosed at just 22 months old, April 30th 2010 to be exact. Now 12, and soon to be teenager this June 24th, Izzy is a tik tok dance queen who has a crush on Youtuber Sketch. She also loves to paint and draw. Scott does public speaking for the Leukemia and Lymphoma Society and walks annually in the Toronto Light The Night Walk. To date Team Isabella has raised over $100k.
You can find Scott on Twitter @scottle07
About the Researchers
Brooke Russell, MSc
This project is being led by Brooke Russell, a PhD Candidate in Clinical Psychology at the University of Calgary. Brooke has been working on research to improve long-term outcomes for survivors of childhood cancer since 2014. Aside from fear of recurrence, Brooke also studies outcomes like sleep, fatigue, pain, symptom burden, and quality of life after treatment.
You can find Brooke on Twitter @brookerusselll
Fiona Schulte, PhD
Dr. Fiona Schulte is an Assistant Professor in the Department of Oncology, Division of Psychosocial Oncology in the Cumming School of Medicine at the University of Calgary. She is also a registered psychologist in the Hematology, Oncology and Transplant Program at the Alberta Children’s Hospital. Fiona’s research is broadly interested in enhancing the patient and family experience for patients diagnosed with cancer and improving the psychosocial late effects of childhood cancer survivors.
You can find Fiona on Twitter @SchulteFiona
Lianne Tomfohr-Madsen, PhD
Dr. Lianne Tomfohr-Madsen is an Associate Professor of Psychology at the University of Calgary and holds a Clinical Psychology Professorship in Child Health Psychology at the Alberta Children’s Hospital. Lianne's research focuses on psychological and social factors that promote or detract from optimal health trajectories, including the development of preventative interventions for at risk populations.
You can find Lianne on Twitter @ltomfohr
About our Funding
Brooke Russell holds the Canadian Institutes of Health Research (CIHR) Frederick Banting & Charles Best Graduate Scholarship Doctoral Award and the Alberta Innovates (AI) Training & Early Career Development Graduate Studentship. These awards provide stipend support to Brooke Russell. This project is also supported by start-up funds provided to Dr. Fiona Schulte from the Arnie Charbonneau Cancer Institute & the Alberta Children's Hospital Research Institute.