While improvements in cancer screening, detection and treatment have led to significantly higher survival rates for Canadians, cancer care must evolve to include rehabilitation as an essential component of care.
According to a 2022 report published by the Canadian Cancer Society, more than 1.5 million Canadians are living with a history of cancer, a number that is expected to continue to rise. Today, about 60 per cent of Canadians with a history of cancer were first diagnosed five to 25 years ago, demonstrating that living long term with or after cancer is increasingly common. However, while our system funds and manages cancer as an acute disease focused on detection and treatment, there is little attention paid to recovery, including managing persistent and long-term side effects.
“Most people are surviving, which is fantastic,” says Jennifer Jones, Director of the Cancer Rehabilitation and Survivorship Program and the Butterfield Drew Chair in Cancer Survivorship Research at the Princess Margaret Cancer Centre. “But that isn’t to say that when you finish treatment and you have a good prognosis, there aren’t these persistent side effects that people have to deal with.”
Jones says it is critical that health-care systems adapt to meet the challenges that cancer survivors experience in the transition from dealing with the short-term impact of cancer to managing long-term survivorship issues.
“I always talk about how the World Health Organization talks about how disability is as important as mortality,” says Jones. “Our system is very much set up in terms of reducing mortality. We talk about beating cancer and the mortality rates, which is obviously very important, but I think that we also need to consider disability in the discussion.”
Many cancer survivors experience various adverse effects after treatment that may persist for years; some may even experience new late effects years after they have completed treatment. These may include fatigue, pain, deconditioning, cognitive changes, depression and changes to sexual function and intimacy. Compared to individuals without a history of cancer, cancer survivors report more physical and functional limitations, psychological distress and poorer quality of life.
In Canada, it is estimated that 87 per cent of cancer survivors report experiencing at least one physical symptom post-treatment; 78 per cent experience at least one emotional issue; and 44 per cent experience at least one practical challenge, such as returning to work and paying out-of-pocket for health-care related expenses. Similar challenges post-treatment have been reported in countries including the United States, England and Denmark and in the Asia-Pacific region. When asked why these needs are not addressed, cancer survivors in Canada reported believing that nothing could be done about their concerns, nor did they know what services would be available to help them.
Cancer rehabilitation has been defined as “medical care that should be integrated throughout the oncology care continuum and delivered by trained rehabilitation professionals who have it within their scope of practice to diagnose and treat patients’ physical, psychological and cognitive impairments.”
Comprehensive cancer rehabilitation includes the coordination of services delivered by a variety of health-care providers, including physiatrists, physical and occupational therapists, kinesiologists, social workers and dieticians, to name a few. It is ideally delivered as a team and focuses on prevention and treatment of various side effects from cancer treatments; it has the potential to improve symptom management, physical, social and psychological well-being, and quality of life. However, very few patients receive such care.
Comprehensive cancer rehabilitation programs are still the exception in cancer care in Canada.
Comprehensive cancer rehabilitation programs are still the exception in cancer care in Canada. It is estimated that only 20 sites across the country offer some form of cancer rehabilitation programming, with most of these programs located within large urban centres in southern Ontario and Quebec. One of the primary reasons is that outpatient cancer rehabilitation is largely not included in the funding structure of cancer care.
“Cancer is still very much set up and funded as an acute-care system, which means that they fund the diagnosis and the treatment of cancer, but they don’t fund the recovery from cancer,” says Jones. “What they will fund is the surveillance for recurrence or second primaries. Patients will come back and see their oncologist and have screening to make sure their cancer hasn’t come back and that’s funded and part of survivorship care. But what’s not funded are the other important pieces like intervention for persistent side effects and late effects and coordination of that care.”
While cancer-care systems are recognizing the importance of systematically and routinely screening patients for cancer-related impairments, systems in Canada have acknowledged the importance of making better use of patient data. Improving and implementing technologies and processes to identify patients in need and subsequently connect them to these services is critical. Currently, impairments often go unreported and unrecognized, and existing rehabilitation services are underutilized.
As well, there are a limited number of rehabilitation professionals trained in oncology, creating a challenge to developing a comprehensive cancer rehabilitation program with a multidisciplinary team and instead leads to the development of services focused on a specific impairment (e.g., a lymphedema program). As a result, when patients are referred to services, there may often be a one-dimensional focus on treating each symptom or impairment separately. Alternatively, the comprehensive cancer rehabilitation model offers the opportunity for a multidisciplinary team to evaluate the totality of challenges that a patient faces and to coordinate the delivery of services more efficiently. Furthermore, a comprehensive approach could reduce financial and logistical challenges for the patient by reducing the number of appointments with different providers on different days, requiring more travel and time off work.
The Cancer Rehabilitation and Survivorship Program at the Princess Margaret Cancer Centre is one of the few programs that have implemented this delivery of care into real-world practice. The program offers people with an identified impairment an initial joint consultation with a physical or occupational therapist and a physiatrist to assess the patient’s needs and develop a care plan. This plan may include providing self-management education, referrals to consultations with other rehabilitation professionals in the program, and/or community services. The program also offers an eight-week group rehabilitation session for individuals with higher needs that combines exercise and education, as well as an eight-week online program with weekly brief one-on-one support by video or phone for people unable to attend the in-person program.
Lloyd Davidson saw significant improvement in his day-to-day life after joining the Cancer Rehabilitation and Survivorship Program several years ago.
“Walking was very difficult. My balance was poor. I could only stand for brief periods. I had almost no grip strength. I had very limited tolerance for exercise, and I could barely lift things,” says Davidson. “One year after treatment, I just wasn’t getting any better.”
It was at this point that Davidson was referred to the rehabilitation program. Following a comprehensive assessment, he was referred to a kinesiologist for further support.
“The kinesiologist met with me every three months, each time adjusting the exercises after a new set of measurements and tests.,” says Davidson. “I’m delighted to report that I gained about half of the muscle loss I had experienced. I have much better balance and I can walk two miles. My condition outlook has vastly improved. I feel a lot better and feel a lot more optimistic.”
However, the Cancer Rehabilitation and Survivorship Program is limited to people receiving care at the Princess Margaret Cancer Centre, meaning many cancer survivors across the country do not have access to the comprehensive support they need. To improve accessibility for all Canadians, rehabilitation must be included in the funding structure, and we must improve ways to identify patients with impairments, increase the capacity and training of rehabilitation providers and empower cancer survivors to take control of their well-being through participation in rehabilitation services.
Cancer survivors should not be left to feel like they need to manage their impairments on their own. Programs like the Cancer Rehabilitation and Survivorship Program provide a model for cancer centres across Canada to provide timely and comprehensive rehabilitation services. The increasing number of people living with a history of cancer indicates the need for a discussion on how cancer care should be reformed to include rehabilitation as an essential part of care. This would send a strong message to patients, caregivers, and health-care providers on the importance of improving function, recovery, and quality of life.
We would like to acknowledge the Raw Talk Podcast’s episode #40 team: Melissa, Kat, and Eryn were Show Hosts on the episode; and Grace was the editor for this episode. This article was edited by Junayd Hussain, Science Writer for the Raw Talk Podcast.
To learn more about cancer rehabilitation, as well as the Cancer Rehabilitation and Survivorship Program, we invite you to listen to episode #40 of Raw Talk Podcast, titled “What Does it Mean to Survive Cancer.”
Unfortunately and sadly I think that some of these side effects from treatment for cancer are deemed as “functional” in nature which as I understand many health care providers equate with “psychogenic” symptoms as opposed to organic symptoms where the patient should be able to deal such effects on their own. Basically along the lines of feeling somewhat depressed because you’ve had a bad flu for a week and you can’t go out and meet your friends. This attitude among some health care personnel needs to change, absolutely.