February 4th is World Cancer Day – a day that unites us all in the fight against cancer by raising awareness about the disease that more than 1 in 2 Australian men and 1 in 3 Australian women will be diagnosed with.
According to the Cancer Council Australia more than 130,000 new cases of cancer will be diagnosed in Australia this year and while information about survival rates is reported there is no measure of quality of life and unmet physical and emotional needs at a population level.
University of South Australia Professor in Cancer Nursing and Director of the Rosemary Bryant Research Centre, Marion Eckert, and members of the Cancer Care Research Group at UniSA are working to change this by developing the first Australian cancer survivorship monitoring system CanLEAD: Cancer Life Experiences After Diagnosis.
“What we know when it comes to cancer care is that you can’t manage what you don’t measure,” Prof Eckert says.
“Sixty six per cent of people with cancer survive at least five years after diagnosis and because of improvements in detection and treatment and the increasing rate of cancer cases more people are living with a diagnosis of cancer than a decade ago.
“Approximately one million Australians are alive today with a recorded cancer diagnosis but not all of those people are surviving well because increased survival does not necessarily equate to increased quality of life.
‘Our research is all about trying to understand the challenges faced by survivors and how to best address them and will offer leadership in additional areas beyond therapeutic treatment that we hope will result in targeted impacts on lifestyle intervention and the enhancement of peoples’ quality of life.
“Currently we have no way of determining how well cancer survivors are doing aside from their clinical response to treatment so our vision is for CanLEAD to inform a population-based cancer survivorship monitoring system in Australia.
“This research is the first of its kind in the nation and is being co-designed with consumers to ensure we measure what matters.”
The CanLEAD system will monitor the burden of unmet needs in order to better inform support services, policy makers and consumers across Australia.
Intelligence from survivorship outcome data is critical for directing health-system changes that better manage tight budgets experiencing cost pressures from increased service use and wastage, introduction of new therapies, commercial interests and effects of population change.
“We have no measure for doing this now but the knowledge and data that will help us understand the complexities of living with a cancer diagnosis will inform diligent effective health service planning,” Prof Eckert says.
“We are also engaging industry partners such as Cancer Voices and international research agencies in the Netherlands to ensure the system addresses consumer’s needs capturing the quality of life issues that they consider critical to know more about and linking in with international leaders in this field of cancer research to inform a system that is evidence based and sustainable.
“The plan is for CanLEAD to inform health systems about the physical and mental health needs of cancer survivors and be a standardised quality of life reporting system that monitors patient-reported outcomes to achieve the best care, first time, every time.”
Media contact: Katrina McLachlan mobile: 0414972537 email: firstname.lastname@example.org