University of Calgary’s Study’s Innovative Approach Supports Kids and Families Staying Active During Cancer Care
Physical activity has positive outcomes for children and adolescents affected by cancer, helping them manage symptoms, enhance their physical and psychosocial well-being, and possibly extend how long they survive.
Despite the evidence, children often become inactive during treatment and there are currently no formalized exercise programs to support them.
To address this gap, Dr. Nicole Culos-Reed, PhD, professor in the Faculty of Kinesiology; Dr. Amanda Wurz, BA’11, MSc’14, PhD, assistant professor in the School of Kinesiology at University of the Fraser Valley; and the team in the UCalgary Health and Wellness Lab have developed the IMPACT program. IMPACT (IMplementation of Physical Activity for Children and Adolescents on Treatment) is an individualized exercise program for any child or adolescent affected by cancer or blood disease who is receiving treatment (or has recently completed treatment) in Alberta. Consultations with international experts and local health-care providers and best evidence informed the development of IMPACT.
“We are offering a tailored approach to movement, not just saying to kids and parents, ‘Here’s the guidelines, go get active’! Instead, we are saying here’s the resource to support you,” says Culos-Reed.
IMPACT is delivered online, one-on-one over 12 weeks by an exercise specialist with specific training in paediatric cancer and exercise. The sessions range in length and intensity and are tailored to how the youngster is feeling.
“We have a protocol and elements that we generally want kids to do, but, if the child is feeling unwell, exercise might look like lying in bed stretching and sometimes it looks like getting up and moving,” says Emma McLaughlin, MSc’21, exercise specialist and kinesiology PhD student supervised by Culos-Reed.
Eight-year-old Janine participated in the IMPACT study.
Diagnosed with leukemia in July 2021, Janine, now eight years old, was encouraged by her physiotherapist to participate in IMPACT. “Depending on where Janine was on treatment, her energy levels changed,” explains Janine’s mom, Laura. “If she was tired, then activities were a little lower energy – or, if she felt like moving around and jumping, then that could happen, too. She could choose. It was great to have the whole activity just for her.
“She looked forward to the sessions all week. It was great because it was tailored to her interests. She loves princesses and Moana and Frozen, so that was incorporated in the session to keep her engaged.”
Shortening the gap between research and care
Traditionally, there is a focus on ensuring research occurs in ideal conditions before translation into practice. As a result, it often takes a significant amount of time between research findings and uptake of those findings.
To shorten the gap, IMPACT designed an implementation-effectiveness trial. The study takes place in a real-world setting with modifications made through quality-improvement cycles along the way. “We’re not only trying to generate evidence, but bring this resource to kids and families sooner,” says Culos-Reed. “We’re really trying to change the culture of cancer care. We want movement to be part of the care plan right away.”
Throughout the process, the study team interviews health-care providers, exercise specialists, and kids and families participating in IMPACT.
“We are trying to understand many different perspectives so we can learn as we go and build on the program and study,” says McLaughlin. “We want to ensure the program is beneficial for kids first and foremost, but also ensure it’s not too time-consuming for health-care providers. We also and want the exercise professionals to feel equipped and empowered. This way we can feed the best evidence right back into the trial.”
Bridget Penney says IMPACT is helping boost Mira’s confidence. The exercise shows her what she can do.
Riley Brandt, University of Calgary
Relationship-building through personalized care and play
Children and adolescents diagnosed with cancer are often pulled out of everything – school, social life, activities they love. One of the many benefits of the IMPACT design is its ability to offer an individualized, tailored approach to each child’s needs.
“We want to empower kids and get them back that sense of control. That’s something exercise can do,” says Culos-Reed. “Kids and families are thrown into a system and everything is a whirlwind. When we can give kids the option to engage in exercise they choose to do, it’s in their control.”
Adds McLaughlin: “Making movement fun is what I love to see. We build a friendship. Seeing the kids progress and be confident, sharing they are able to do something that they haven’t been able to do since they’ve been on treatment, that is a motivating piece for me.”
Lorna reflects on her overall experience with IMPACT: “I think one of the best parts was the bond Janine created. It wasn’t just a study, or trial, or just some activity that was part of her treatment that she had to do. It was something she looked forward to. It not only helped with her with her cancer – but was an extra special activity, just for her.”
Through play, empowerment and building confidence, the study team hopes the program will help young people realize physical activity can be fun and something they want to do for the rest of their treatment and their life beyond.
The study is supported by the Canadian Institutes of Health Research and the Kids Cancer Care Foundation through the Arnie Charbonneau Cancer Institute at the Cumming School of Medicine. Currently at the Alberta Children’s Hospital in Calgary and the Stollery Children’s Hospital in Edmonton, the IMPACT study team has plans to expand across Canada.