Measuring the cancer experience

New reports highlight experiences of cancer patients

Good cancer care is about more than diagnosing and treating the disease. Cancer can be overwhelming, and patients face many emotional, psychological and practical issues.

Few organizations report on these issues and there is very little data on what patients experience. The Partnership has started to address this lack of data with reports on three areas that require action:

  • adolescents and young adults (AYAs) with cancer
  • palliative and end-of-life care
  • the physical, emotional, psychological and practical challenges faced by people with cancer as they wait for a diagnosis, and during and after their treatment

Adolescents and young adults with cancer face unique challenges

Cancer patients between the ages of 15 and 39 face a unique set of challenges, including loss of fertility due to treatments, disconnection from peers and interrupted education and career. The Adolescents and Young Adults with Cancer report is the first time Canada-wide data on cancer and care has been reported for this age group. The report highlights the need for better data to understand the gaps that exist in care for these younger patients and calls for more research to address their special needs.

AYAs have 50, 60, 70 per cent of their lives left in which they have time to give back. They have a whole lot to offer…and that is a message they do not hear too often…they often just get the ‘pity eyes’…and that makes you feel like a victim. We need to be built up!
– Michael, Cancer Survivor

Palliative care not just about end-of-life care

Palliative care can significantly improve a cancer patient’s quality of life through better pain and symptom management and support for emotional and spiritual needs. The Palliative and End-of-Life Care report finds that patients are not being identified, assessed and referred for palliative care early enough. The report argues that palliative care should be integrated into routine care from the time of diagnosis so that all patients and families can benefit from it throughout their cancer experience.

As a cancer survivor and caregiver for someone with the disease, I have witnessed the benefits of palliative care and how it helps people physically, emotionally and spiritually.

I would like to see our health system start to incorporate it earlier in the cancer journey and take steps to remove the stigma around the word ‘palliative care.’ It is not about making people comfortable before they die.

It should be considered a normal aspect of cancer treatment.
– Penelope, Family Caregiver

Patients identify where cancer care falls short

The experiences of more than 30,000 Canadians shed new light on the cancer journey in Living with Cancer: A Report on the Patient Experience. This report breaks new ground by reporting from the perspective of patients and how they experience cancer and cancer care. The report shows that many people with cancer have significant physical and emotional side effects before diagnosis and during and after treatment, and that they are not receiving the support they need from health care providers.

I found it was all harder after treatment stopped. So much more of what you are dealing with is mental, emotional and dealing with day-to-day living.
– Charlotte, Patient Advisor

Related publications

Download the report

Annual Report 2017/18