What is Cancer Rehabilitation? Part One

By Jaymee Maaghop
CCSN Public Policy Assistant

In a report released in 2017, it was found that one in every two Canadians will be diagnosed with cancer in their lifetime. This report was released by the Canadian Cancer Society (CCS) in partnership with the Public Health Agency of Canada and Statistics Canada.

With advancements in cancer control such as prevention, early detection and treatment, the survival rates have increased to as much as 60%.[1] This means that 800,000 Canadians have survived cancer for ten years or more.[2] While this represents significant progress, it is important to recognize that cancer care does not stop after treatment ends. The effects of cancer and its treatment can have profound side effects that impact daily living. This can include having physical, emotional, and financial hardships for months to years after treatment.

In this three-part blog series, I take a look at the fragmented structure of cancer rehabilitation services in the Canadian healthcare system and what it means for patients living with cancer and cancer survivors. I will also be taking a look at the 2018 report released by the Canadian Partnership Against Cancer (CPAC) entitled “Living with Cancer A Report on the Patient Experience.” What this all reveals is that there is much to be done to address the post-treatment gap in cancer care.

So what exactly is rehabilitation?

According to the World Health Organization, rehabilitation is a “goal oriented and often time-limited process, which enables individuals with impairments, activity limitations and

 

participation restrictions to identify and reach their optimal physical, mental and/or social functional level through a client-focused partnership with family, providers and the community.”[3]

Under the Canadian framework, rehabilitation mostly exists for cancer patients during their treatment. Once patients have finished treatment, they are often left to navigate general health services and resources for help with the long term consequences of cancer and its treatments.

“Patients feel abandoned when treatment ends,” says Jackie Manthorne CCSN President & CEO. “They are off on their own after treatment.”

Rehabilitation works for cancer survivorship.

Research conducted across Canada shows that rehabilitation has positive impacts on the quality of life of cancer survivors.[4] In fact, Alysa Canestraro et. al argue that there is “good evidence… for the use of exercise/physical rehabilitation in reducing fatigue after treatment for most cancers, and improving upper extremity functioning following treatment for breast cancer.”[5] Other studies show that oncology rehabilitation is “an important therapeutic intervention for people with cancer.”[6]

There is an increasing need for rehabilitation in the post-treatment cancer care framework

Charlotte Kessler, a 36 year old Ottawa mother, was diagnosed with a brain tumour in 2013. After her treatments ended and she had to leave her oncology support team behind, she said, “I need help…I don’t know what I need… but I need help.”[7]

Doug Nugent, a prostate cancer survivor, said “I find that some patients aren’t educated on side effects. When I was going through my journey, before surgery the Ottawa Hospital held an information session with a group of five men who were going through prostate cancer surgery. They told you what the side effects would be, how to use your catheter, different things about going into surgery and what can happen after surgery…But from talking to men in my support groups, I found that these resources are not always offered and their rehab was not as positive as mine’s are. There are other men who don’t have this at all.”

“Living with Cancer: A Report on the Patient Experience”

This report talks about the experiences of cancer patients, survivors and their families in their experiences on living with cancer and living as a cancer survivor. While many other groups, including CCSN, have done research on life after cancer, this report is significant because it surveyed 30,000 Canadian cancer patients, survivors and their families. The report is divided into three sections, with post-treatment care being one of them. It concludes that post-treatment care and rehabilitation are integral to leading the best quality of life during life after cancer.

In my next blog post, which will be published in late February, I will provide information on the CPAC report as well as testimonies from cancer survivors on their experiences of navigating the healthcare system and their new lives after cancer treatment. I will also elaborate on the challenges remaining in Canada’s fragmented oncology rehabilitation framework.


[1] “Nearly 1 in 2 Canadians expected to get cancer: report,” Canadian Cancer Society, 20 June 2017, http://www.cancer.ca/en/about-us/for-media/media-releases/national/2017/canadian-cancer-statistics/?region=sk.

[2] CTVNews.ca Staff, “They feel abandoned’: Cancer survivors say post-treatment support is lacking,” CTV News, 3 February 2018,  https://www.ctvnews.ca/health/they-feel-abandoned-cancer-survivors-say-post-treatment-support-is-lacking-1.3788402.

[3] Definition adapted from WHO and used in Managing the Seams, Ontario provincial rehab reference group working document, 2000.

[4] Sara McEwen et. al, ““I didn’t actually know there was such a thing as rehab”: survivor, family, and clinician perceptions of rehabilitation following treatment for head and neck cancer,” Support Care Cancer, vol. 24, 2016, p. 1449.

[5] Mary Y. Egan et. al, “Rehabilitation following cancer treatment,” Disability and Rehabilitation, vol. 35, no. 26, 2013, pp. 2245-2258.

[6] Alysa Canestraro et. Al, “Oncology Rehabilitation Provision and Practice Patterns across Canada,” Physiotherapy Canada, vol. 65, no. 1, 2013, p. 94.

[7] CTVNews.ca Staff, “They feel abandoned’: Cancer survivors say post-treatment support is lacking,” CTV News, 3 February 2018,  https://www.ctvnews.ca/health/they-feel-abandoned-cancer-survivors-say-post-treatment-support-is-lacking-1.3788402.

2 thoughts on “What is Cancer Rehabilitation? Part One

  1. The news about cancer rehab services, as you use the term here, is not new. Cancer survivors and advocates who lobbied in 2005 to advance a comprehensive Canadian Strategy for Cancer Control and create the Canadian Partnership Against Cancer, championed the inclusion of survivorship, psychosocial support and advocacy as a critical priority for CPAC.

    Emotional support and survivorship research was a priority for CPAC early on in its mandate, and resulted in the development of the 2011 report “Pan-Canadian Guidance on Organization and Structure of Survivorship Services and Psychosocial-Supportive Care Best Practices for Adult Cancer Survivors.”

    The recommendations were never implemented.

    But the research findings from Canadian institutions and clinicians, funded by Canadian taxpayers helped inform the development and implementation of national cancer strategies in the U.S., Australia, the United Kingdom, Ireland, Israel, Finland, Denmark, Sweden, and New Zealand.

    The question to be answered is why CPAC can’t act more quickly in response to evidence?

    The answer comes directly from the recent evaluation of CPAC by Health Canada: they are mandated by government NOT to advocate or engage Canadians:

    1. “The Partnership should be diligent to avoid advocacy role.”
    2 “The Partnership should NOT broadly engage the general public and patients.”

    These limitations to action were inherited from previous governments, and reflect a long-held bias against patient and citizen engagement and advocacy. In fact, the Canadian Partnership Against Cancer would not exist today without the advocacy campaigns and ads that pushed governments to take action.

    Provincial goverments have already begun implementing chronic-disease self-management programs, that enable individuals to access non-tradtional, evidence-based resources within their communities. Provincial goverments support innovative models that get patients out of acute care and into community-based and self-care programs. There are excellent comprehensive care models – such as the Ottawa Cancer Foundation “Cncer Coaching” program, Wellspring and Wellwood – that could be scaled up.

    The CCSN might want to consider what role it might play in creating a sense of urgency for action in gaining public and goverment support to address the issues:

    – is government committed and resolute in addressing survivor needs ? Is the policy imperative clear?
    – is society willing, resolute and committed? Is their a societal expectation that a better set of circumstances is right, deserving, expected and attainable?
    – is there leadership at all levels : political , professional , patient and public? Are there “transformative thinkers ….and doers” ?
    – is there a realistic plan to achieve the goals intended ( strategy, business, management and operations)?
    – are there resources that can be directed to this activity through implementation into standard practice?

    The report offers a timely opportunity for a skilled advocacy organization to better champion cancer survivorship needs.

    1. Thank you Pat.

      CCSN is committed to this cause. You will be hearing more about our efforts soon, which involve an all-party cancer caucus at Queen’s Park later this month surrounding the topic of gaps in cancer rehabilitation, as well as asking questions surrounding cancer rehabilitation to political representatives in this upcoming Ontario election campaign. We will be encouraging patients and individuals to do the same.

      Stay tuned! Thanks for your thoughtful response.

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