UCalgary researcher leads development of international guidelines to support young cancer survivors

University of Calgary alumna Iqra Rahamatullah, BSc'20, has a bright future in medicine. Only a few short years ago, she was in Grade 11 focusing on one day at a time while managing treatments for Ewing sarcoma.

“I was not feeling well, I was taking a lot of days off school, dealing with a lot of symptoms like brain fog, memory impairment and fatigue,” reflects Rahamatullah. “I had a lot of obstacles that the usual student doesn't have, and I felt like it really put me back.”

Rahamatullah’s experience is common for childhood, adolescent, and young adult cancer survivors but many do not have a bright future, academically or in a career.

“Young cancer survivors have lower educational outcomes and are not employed at the same rates as their peers. We need to support them in improving that,” says Dr. Fiona Schulte, PhD, associate professor at the Cumming School of Medicine.

“All too often our idea is that when kids finish their treatment for cancer, the hard part is done. But for many, the hardest parts are still to come.” 

Task force supports young cancer survivors

Schulte co-chaired a multidisciplinary international task force to develop a global recommendation for the surveillance of education and employment to support young cancer survivors so that they don’t fall behind their peers. The guidelines, published in Cancer, recommend all survivors receive regular screening for educational and employment outcomes, just like the regular physical screening they receive as cancer survivors.

“Educational achievement and employment outcomes are critical indicators of quality of life in survivors of childhood, adolescent, and young adult cancer,” says Schulte. “We now have a clinical practice guideline (CPG) with internationally harmonized recommendations for surveillance of education and employment in survivors diagnosed before 30 years of age, which can improve their quality of life.”

Kids Cancer Care recognized the need to support kids affected by cancer in their educational and vocational pursuits. “The whole intention of everything that we do at Kids Cancer Care is to help children survive and thrive in body, mind, and spirit,” says Christine McIver, founder and CEO of the organization.

“We have recognized the need for interventions, and we’ve developed our education support program and scholarship fund in response to that,” she says.

Solid educational support

In 2008, the foundation established the first scholarship fund in Alberta for young cancer patients and survivors and in 2015, they introduced an educational support program to help young people build a solid base — socially, emotionally, and academically.

“We know that radiation and chemotherapy can really compromise kids’ intellect and cognitive abilities and so we want to support them to survive through those things,” says McIver.

As success in the treatment of childhood, adolescent, and young adult cancers increases, the population of long-term cancer survivors has grown, as has the need to understand how to best support their quality of life in the long-term. 

Rahamatullah says she had a lot of assistance and encouragement while she was going through treatment. “I had a lot of family and school support available and was able to get the grades that I needed but without that support, I feel like things could have gone wrong for me,” she notes.

Through her experience as a patient, student, and survivor, she feels it is important to raise awareness to address those challenges. “There are so many things that bring you down, and you need something to give you a leg back up,” she says. 

A multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group developed the Clinical Practice Guidelines. The group is composed of international scholars from Canada, the United States, Switzerland, the Netherlands, the United Kingdom, Denmark and Belgium. It was supported by the Krebsliga Zentralschweiz, the Swiss National Science Foundation, and the European Union's Seventh Framework Programme for Research, Technological Development, and Demonstration.

About the Education Support Program at Kids Cancer Care

The Education Support Program at Kids Cancer Care — the only one of its kind in Canada — provides volunteer-based tutoring support services to children and siblings impacted by cancer. Through the strong relationship built between the tutor and learner, the program provides a safe space where kids are not only supported in subject matter and learning skills, but also supported in building confidence and a sense of belonging.

We want kids to think, “If I can get through this, I can get through anything,” say education support specialists Leslie Friesen and Karin Schlegel.

“The magic here is the opportunity to bring together one-on-one personalized, targeted learning support that goes beyond specific educational metrics and builds skills that kids can carry back into the classroom and into their personal lives.”