Groundbreaking report looks at Canadian cancer care exclusively from the patient perspective
Report highlights significant challenges for many from fearing something is wrong through to finding a “new normal” after cancer treatment is over, and beyond
January 29, 2018
TORONTO – The Canadian Partnership Against Cancer has released Living with Cancer: A Report on the Patient Experience. This groundbreaking report reflects the voices of over 30,000 Canadians and is the country’s largest accumulation of patient data on the experiences of people living with, and beyond, a cancer diagnosis.
The report shows that while their cancer may be well treated, many patients experience significant, and often debilitating, physical and emotional side effects of the disease that are often not being adequately addressed.
- Up to one in five cancer patients report no one discussed different treatment options for their cancer with them.
- Up to one in four report that their care providers did not consider their travel concerns when planning for treatment.
- One in four report that they were not satisfied with the emotional support they received during outpatient cancer care.
- Eight in 10 report having physical challenges after their treatment ends. Increased fatigue and changes in sexual function and fertility were the biggest concerns.
- Seven in 10 report having emotional challenges after treatment ends. Worry about cancer returning, depression and changes in sexual intimacy were their biggest concerns.
- Four in 10 report having practical challenges after their treatment ends. Returning to work and school, as well as financial problems such as paying health-care bills and getting life insurance were the biggest concerns.
View the full report.
To address these gaps in the cancer patient experience, the Partnership is pushing for change collaborating with provincial governments, cancer agencies and programs, and other health sector organizations to implement tools that allow patients to report details of their symptoms in real time to their doctors. Doctors can then use this information to promptly refer patients to therapists or other services where their symptoms can be managed. This information can also be used for planning at the system level to ensure services are available where they are needed.
Efforts to improve the cancer patient experience
This report, and efforts to directly address patient needs, would not be possible without ongoing, multi-year investments by the Partnership and provincial cancer programs across the country. The Patient Reported Outcomes (PRO) initiative started in 2013 pushing for all jurisdictions in Canada to have a measurement and reporting cycle for the cancer patient experience. Gaps are now being recognized and through a coordinated pan-Canadian approach, most provincial cancer programs have implemented tools to screen for patient distress, which allows for patients to report, at the time of their medical appointment, on symptoms they are experiencing including: pain, fatigue, anxiety and depression.
In total, eight provinces over five years have implemented systems that collect real time feedback from patients, at the point of care. This feedback supports immediate discussions with health-care professionals that can lead to more meaningful solutions to common problems faced by cancer patients. This means that the additional burden to be proactively tracking and reporting on issues, while competing for the time of medical staff, has been lifted off of the patient. The responsibility is now placed on the health-care provider to use standard tools and practices to routinely respond to patient concerns. Next, the Partnership and provincial cancer programs will work to close the gaps highlighted by patients and will continue to measure if improvements in patient needs are being achieved. The initiative will be expanding to other provinces and territories in the next five years.
Ginette Petitpas Taylor, Minister of Health
All too often, as soon as the word ‘cancer’ is spoken, the focus is on the disease and not the person. But the survivor’s experience with cancer does not end when the disease is gone. This report from the Canadian Partnership Against Cancer shines a light on how to better support patients before, during and after treatment.”
Charlotte Kessler, patient advisor
“Following my cancer treatment, I felt like I was left floating in the breeze in a scary world of uncertainty. I was no longer actively fighting against my tumour but I had this underlying fear that it might recur at some point. My doctors never told me I was in the transition phase of my cancer experience, they did not discuss next steps and things I could expect, and they did not direct me to any resources. I felt like I was on my own,” said Charlotte who is also featured in the report.
Cindy Morton, CEO, Canadian Partnership Against Cancer
“Findings from this report suggest a greater need for people with cancer to speak with their family doctor or oncologist about their concerns before, during, and after treatment,” said Morton, also a cancer survivor. “Patients should not assume their concerns are normal, even if told so, and should discuss symptoms with their doctor. The health system must also do more to support doctors with the right tools and resources to get patients the care they need.”
Lynne Hudson, President & CEO, Canadian Cancer Society (CCS)
“This important report highlights the experience of having cancer in Canada, the many kinds of support people need and where the gaps are, right from diagnosis through treatment and beyond. We all need to do a better job of meeting the needs of Canadians with cancer so patients feel supported and informed throughout their cancer journey. At CCS, we have programs and services in place for cancer patients and their families – including providing reliable information, peer support programs and transportation services – but more needs to be done. We look forward to working with the Partnership and other partners in the health sector to use the information in this report to better service Canadians affected by cancer.”
Esther Green, Director, Person-Centred Perspective at the Partnership
“As the survey data show, many patients continued to suffer symptoms like pain, fatigue and depression without being referred to services that could have helped them like physiotherapy or psychotherapy. The findings suggest health-care providers need to have meaningful discussions with their patients to assess their emotional, physical and practical concerns following cancer treatment and refer them to the appropriate supports. This is not always happening. Not for a lack of concern by doctors for their patients but because of inadequate tools, resources and other supports needed at the system level.”
A full copy of the report is available at systemperformance.ca.
Data for Living with Cancer includes data from multiple sources, including Patient Reported Outcomes partners, the Ambulatory Oncology Patient Satisfaction Survey and initial results from the first Canada-wide study of cancer survivors.
– 30 –
For more information or to arrange interviews, please contact:
Communications Officer, Media Relations
Canadian Partnership Against Cancer
(416) 915-9222, x5799 (office); (647) 388-9647 (mobile)
About the Canadian Partnership Against Cancer
As the steward of the Canadian Strategy for Cancer Control, the Partnership works with partners to reduce the burden of cancer on Canadians. Our partner network – cancer agencies, health system leaders and experts, and people affected by cancer – brings a wide variety of expertise to every aspect of our work. After 10 years of collaboration, we are accelerating work that improves the effectiveness and efficiency of the cancer control system, aligning shared priorities and mobilizing positive change across the cancer continuum. From 2017-2022, our work is organized under five themes in our Strategic Plan: quality, equity, seamless patient experience, maximize data impact, sustainable system. The Partnership continues to support the work of the collective cancer community in achieving our shared 30-year goals: a future in which fewer people get cancer, fewer die from cancer and those living with the disease have a better quality of life. The Partnership was created by the federal government in 2007 to move the Strategy into action and receives ongoing funding from Health Canada to continue leading the Strategy with partners from across Canada. Visit partnershipagainstcancer.ca.