A Newfoundland-based researcher is creating her own Atlantic bubble by inviting Atlantic Canadians to be part of her groundbreaking study aimed at helping cancer survivors.
“It wasn’t a question of why would we do this, it was why wouldn’t we? If we can capitalize on collaboration among the Atlantic provinces, we can serve and help more people,” Memorial University of Newfoundland psychology and oncology professor Sheila Garland said in an interview Thursday.
“It (the idea of an Atlantic bubble) was probably what really prompted this.”
For many cancer survivors, sleeping difficulties and problems with memory, attention, and concentration are long-term effects that linger long after cancer treatments are over. While the prevalence of insomnia in the general population is between 10% and 15%, for those diagnosed and treated for cancer it ranges between 30% and 50%.
“People who are closer to treatment have higher levels of insomnia and it does tend to get lower,” Garland said. “But even five, 10 years out of completing treatment, people who have experienced cancer still report significantly higher levels of insomnia than the general population.”
One of the therapies recommended as a first line treatment for insomnia is Cognitive Behaviour Therapy for Insomnia (CBT-I).
A registered psychologist and a senior scientist at the Halifax-based Beatrice Hunter Cancer Research Institute, Garland has spent the last 15 years researching CBT-I therapy as a treatment for insomnia in cancer survivors. She said it very effectively improves insomnia in the general population as well as in those who’ve experienced cancer.
“One of the things we know with it too is that when we improve sleep, we improve other things. We improve mood, we improve fatigue and quality of life, we can improve depression, we can improve pain,” she explained.
Garland said cancer patients often express the frustration that “getting back to normal” is hampered by so-called chemo-brain, an inability to remember or think clearly.
“We feel like that might actually have something to do with sleep, which is one of the main research questions that we’re trying to answer here,” she said. “If we improve sleep in people who have recovered from cancer, can we actually improve their memory, concentration, and attention?”
Titled ‘Addressing Cancer Treatment-related Insomnia Online in Newfoundland and Labrador (ACTION),’ Garland’s study is being described as the largest global study of its kind. The four-year study will now involve 162 participants from across Atlantic Canada, not just Newfoundland and Labrador.
Study participants will receive CBT-I assessments and treatments online via video on their home computers or tablets.
Funded by the Canadian Institutes of Health Research (CIHR), the ACTION study aims to increase access to CBT-I treatment in order to improve sleep and “investigate whether it can also improve cognitive impairments” in cancer survivors.
“In experimental research we know that even short periods of experimental sleep disruption, or long periods of insufficient sleep quantity, can impact your ability to think, pay attention, concentrate, remember things,” Garland said.
“Nobody has explored whether or not if by addressing sleep in cancer survivors, we can actually get their cognition back, hopefully improve their return to work, improve their personal and societal lives. There’s a huge amount of downstream consequences to improving function of cancer survivors.”
Garland said when people tell their oncologists they feel like they “aren’t thinking straight,” they’re often prescribed stimulant medication. In addition to the side effects, Garland said it doesn’t really work particularly well.
While exercise, antidepressants, and other approaches are also employed to help with “mental fogginess,” nobody has really paid attention to sleep.
In order to participate in the study, people are required to have memory, concentration, and attention issues in addition to problems falling asleep or staying asleep. They should also have completed treatment at least 12 months before entering the study (hormone or maintenance therapies are acceptable). Participants should also be considered cancer-free or in remission.
“We want to make sure that the sleep disruption and the cognitive disruption that they’re experiencing isn’t directly responsible or directly resulting from the treatment that they’re taking,” Garland said.
“Even if people are living currently with a metastatic cancer or a more aggressive cancer, as long as they’re stable on some sort of treatment they would be eligible for the study.”
Garland said the treatment isn’t offered in cancer centres and is “very rarely” available to patients accessing private services. She’s hopeful her study will provide data that will help change that and urges Atlantic Canadians to spread the word.
“If this doesn’t affect you, you probably know somebody who it does impact. It’s a free service that wouldn’t be available,” she said.
Bob Wakeham was cited in a media release for the study. The Newfoundland and Labrador resident completed the ACTION program in December, 2019. He described it as having made a “huge difference” in his quality of life and stressed the importance of cancer patients addressing the emotional and psychological repercussions of their disease.
“The physical side effects of cancer pale in comparison to the psychological effects of cancer, which are long-lasting,” Wakeham said.
“I highly recommend this study and treatment to people who have had cancer and still suffer from insomnia and all of its repercussions.”
Atlantic Canadians interested in participating are encouraged to visit the ACTION study website or send an email.
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