Kathleen Varty, CRTP Trainee, University of New Brunswick
In Canada alone, more than 800 children under the age of 15 are diagnosed with cancer each year. Thanks to advances in cancer research, more than 80% survive. Many of these young survivors face the fear that their cancer may recur – a fear that can cause psychological distress, heightened vigilance toward bodily symptoms, and increased utilization of outpatient and emergency services.
The Beatrice Hunter Cancer Research Institute’s Jen Johnston Prize for Research Excellence aims to recognize outstanding trainee research and encourage trainees to pursue careers in cancer research. This annual award acknowledges a published paper with a trainee as either the co-first author or sole first author. The award was established in 2022 from memorial donations honouring Jen Johnston, daughter of BHCRI’s former Scientific Director, Dr. Gerry Johnston. Jen tragically lost her life to advanced breast cancer in 2021.
This year’s recipient is Dr. Perri Tutelman, a PhD graduate from Dalhousie University’s psychology department. Currently, Perri is a postdoctoral fellow in psychosocial oncology at the University of Calgary and Alberta Health Services. Dr. Christine Chambers, Perri’s PhD supervisor, commends Perri for bringing numerous attributes to the team, including perseverance, genuine concern for children, and a willingness to embrace new approaches.
Advancing our understanding of survivorship issues in a pediatric population
Perri is being awarded for a component of her PhD research, which focused on pain and the fear of cancer recurrence in children. Her published work centres around the development and validation of a questionnaire that assesses fear of cancer recurrence in survivors of childhood cancer and their parents. “Fear of cancer recurrence likely affects childhood cancer survivors and their parents too, but there has been little research in these populations.”, says Perri. She goes on to explain, “One of the main reasons for the lack of research on fear of cancer recurrence in child survivors is that no questionnaires have been developed to accurately measure fear of cancer recurrence in this unique age group. The goals of this project were to develop two questionnaires: one to measure fear of cancer recurrence in survivors of childhood cancer between the ages of 8-18 years, and another to measure fear of cancer recurrence in parents of childhood cancer survivors.” Christine Chambers, Perri’s PhD supervisor states, “Perri’s research on pain in childhood cancer survivors plays a vital role in advancing our understanding of survivorship issues and informs evidence-based practices aimed at improving the well-being and quality of life of children after cancer treatment.”
Perri has always possessed a keen interest in working with children, particularly those facing medical conditions. Growing up in Vancouver, she volunteered at Canuck Place Children’s Hospice, the first freestanding children’s hospice in North America. Through this experience, Perri developed a profound appreciation for assisting children and families navigating incredibly challenging circumstances due to life-limiting or life-threatening illnesses. Perri reflected saying, “From that experience I knew that I wanted to dedicate my life to both helping support kids and their families going through cancer, but also on a larger scale by contributing to research that would advance their care.”
At the beginning of her PhD journey, Perri sought to explore the connection between pain and the fear children face of cancer recurrence. While fear of cancer recurrence is an established construct with validated measurement tools for adults, Perri acknowledges the complexities of adapting these measures to children. She notes, “For children who have gone through cancer there are many developmental factors that come into play that effect the child’s understanding of their experience.”
As a clinician and researcher, Perri places great importance on ensuring her work yields tangible outcomes beyond publication, ultimately enhancing the lives of patients and their families. She remarks, ” Psychologists hear of fear of recurrence all the time. This is a huge issue that we hear patients talk about, but up until now we had no way to quantify it in children and see how they are doing and measure their symptoms.”
Patients and patient partners both play a critical role in Perri’s research. Maya Stern and Julia MacLeod, two patient partners, are co-authors of the study. Perri emphasizes their integral contributions at all stages of the research, stating, “It is important to acknowledge their valuable input.” “To me, being a part of Perri’s research brought a sense of realism to the work. Being able to ask, ‘what does this mean to me as a patient?’ brought new context/considerations to the data and findings at every stage of the research.”, says Julia.
Perri expresses immense gratitude to the BHCRI for their support throughout her PhD, which has propelled her into a career she feels passionate about. Her PhD experience was a collaborative effort, involving numerous contributors from her supervisor, and other BHCRI scientists including Dr. Conrad Fernandez and Dr. Robin Urquhart. It is also deeply meaningful for Perri to receive the Jen Johnston award as it allows her to continue her work with adolescents and young adults, carrying on Jen’s legacy.
“Throughout Jen’s experience with cancer, she exhibited great optimism, resilience and an abiding appreciation for the skill and dedication of the many health professionals that provided care.”, says Jen’s parents Gerry and Judy. “Jen recognized the need for research into all aspects of cancer care and we know that Jen would be pleased and proud of both Perri and the research to which she is so passionately committed.”
The Jen Johnston Award
The Jen Johnston Award was established by in memoriam donations to BHCRI following Jen’s death. The award is to recognize excellence in research by a trainee (current or past) in BHCRI’s Cancer Research Training Program. The evaluation criteria for the award encompasses the excellence of the scientific work, potential impact on patient care, innovation, dissemination, outreach, and knowledge mobilization. The award will be formally presented at the annual BHCRI Workshop in October, where Perri will deliver a platform presentation highlighting the published research.