“There is so much work to be done in the area of pain in cancer, and pain in survivorship specifically,” says Perri Tutelman, a PhD Candidate in Clinical Psychology at Dalhousie University and IWK Health. “We know that rates of childhood cancer survival have increased significantly; in developed countries, about 80 per cent of children diagnosed with cancer are expected to survive long term. Our research highlights that pain is something that needs to be discussed in post-cancer care.”
In April of this year Tutelman received a Research Impact Canada (RIC) Engaged Scholarship Award for Graduate Students in recognition of the impact her research has had in increasing awareness outside the academic arena.
Tutelman’s work on pain and pediatric oncology has informed policy decision making at the international level. In 2018 her first-authored paper in the Clinical Journal of Pain on the prevalence and characteristics of pain in children with cancer. was used as evidence to bring awareness to the burden of cancer-related chronic pain in children and was cited by the World Health Organization in their recently released Guideline on the Management of Chronic Pain in Children.
Tutelman’s research has also contributed to increased media and public awareness about the problem of pain in childhood cancer, as well as the importance of patient engagement in health research.
“Life after cancer often brings new challenges, including chronic pain,” says Tutelman. “The reasons for this are not well understood, but are likely a combination of biological (e.g., alterations in neural processing) and psychological (e.g., thoughts and feelings about cancer and pain) factors.”
For the research Tutelman’s team interviewed ten childhood cancer survivors who were treated at the IWK. They were interested in understanding the survivor’s lived experience of pain, how they ascribe meaning to their pain, and how they make sense of the pain.
Tutelman believes that what they learned not only highlights that pain is something that needs to be discussed in post-cancer care but also the importance of how clinicians communicate about bodily monitoring and pain monitoring after cancer.
“It makes sense that cancer survivors and parents would be concerned about pain and other bodily symptoms, but how can you be appropriately vigilant and aware?” asks Tutelman. “This is easy to say but hard to do in real life, and this is where clinicians can help guide children and parents about the symptoms and sensations they need to worry about—what’s normal, what’s cause for concern—and how to go from there.”