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Ahead of Our Time

Recruiting superhero cancer patients to defeat pain

If you ask a teenage cancer patient to keep track of their pain symptoms on a piece of paper or a traditional symptom score sheet, you’ll likely get a roll of the eyes, maybe a sigh, and little chance that it’ll actually happen the way it should.

But a project involving nine Canadian pediatric oncology centres, including Edmonton’s Stollery Children’s Hospital, is tackling the challenge of proper pain reporting by teenagers by offering them an alternative they’re already very familiar with – a smartphone app.

Pain Squad+ was developed at Toronto’s Hospital for Sick Children, which is the lead site for a multi-year randomized clinical trial to evaluate the impact of the app on young cancer patients’ quality of life and self-management of pain. The trial involves 12- to 18-year-olds and has so far enrolled more than 70 participants across Canada.

The Edmonton research team, which has been involved in the project since November 2019, is led by Sarah McKillop, an oncologist at the Stollery and the Cross Cancer Institute and an assistant professor at the University of Alberta. With support from the Stollery Children’s Hospital Foundation and the Kids with Cancer Society, the local study is being managed by WCHRI’s study coordination team.

“We recognize that all of our adolescent and child patients have pain at some point, probably more than we hear about,” says McKillop. “It’s difficult sometimes to get the actual reporting of what pain they’re having.”

While cancer is more common in older people, each year in Alberta, about 237 young people are diagnosed with cancer.

Pain in cancer patients can be acute or chronic, or both. It can result from chemotherapy and other treatments, surgeries and tests. The current method of tracking pain and other symptoms involves asking patients to record how they feel on paper score sheets, which are reviewed by their medical team at regular appointments, which can be weeks apart. McKillop says this isn’t effective with teenagers, who either don’t want to bother with the task or they get their parents to do it, which can result in inaccurate reporting.

Pain can impact a teenage patient’s quality of life, making them reluctant to go to school or get out with their friends. It can also affect their rehab and can contribute to mental health problems, which are common in cancer patients. “Having pain itself and its impact on their lives can certainly make the symptoms of depression or anxiety around doing activities worse,” she says.

The Pain Squad+ app is set up like a video game, where users create superhero avatars who carry out missions to defeat Squidopus — by completing two daily pain reports and unlocking a range of pain advice to help them manage their symptoms. “They’ve tried to make it as teenager-appropriate as possible,” says McKillop. “Early on it was recognized that if you didn’t have engagement and if you didn’t make it fun and provide rewards, no one was going to continue to do this reporting.”

Data is still being collected in Edmonton and the other sites to determine the effectiveness of the app. Proper pain reporting is crucial to giving doctors a better understanding of their patients and how their treatment is affecting them.

But empowering young patients to take control of their pain management is also a key element of the project, says McKillop.

“Doctors getting this information is important, but even more important is helping to educate that young person about looking at their own pain story and recognizing when they need to ask for help. And it helps to validate some of the experiences they’re having.”

Study management support for this project is supported by the Stollery Children’s Hospital Foundation through the Women and Children’s Health Research Institute.

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