Unveiling the challenges of life after cancer

Cancer care researchers at UniSA are leading Australia toward including a standard quality of life assessment in routine monitoring of cancer survivors to help them go on to live the very best lives they can after a diagnosis.

During cancer treatment there is an intense focus on survival; on beating the cancer so that life can continue. Patients are busy attending chemotherapy and radiotherapy appointments, visiting specialists, and coping with the physical, emotional and practical strain of their diagnosis. Throughout this time their care is carefully managed by a dedicated health team.

When treatment ends, if no ongoing therapy is required, patients can suddenly feel cast adrift as they are expected to return to their old lives. Yet life has changed.

Until recently, the quality of how a patient was supported after cancer stretched as far as any major complications or risk of the cancer returning. But as cancer treatments have improved, cancer survival rates have followed and today there are an estimated 1.1 million cancer survivors in Australia – many living with a range of physical, emotional and practical issues.

“We are addressing the gaps in care that cancer survivors can experience after they finish treatment"

Professor Marion Eckert, Inaugural Professor of Cancer Nursing in South Australia

“What we need now in Australia is a gold-standard measurement in our public health system of how these people are living, what extra care or services they might need to really live a happy and healthy life after cancer treatment, and to identify those people most at risk,” says Professor Marion Eckert, Director of the Cancer Care Research Group.

“We know that there are a range of issues that can arise – physical side-effects from treatments, financial difficulties, strain on mental health and relationships for example – there are a number of areas in these people’s lives that will change and they may require help to manage.

“The problem is that either no system is set up to capture this information, or where they are in place they are usually different, so these systems don’t always link and therefore the impact is difficult to measure.

“This means that we do not have a deep, long-term understanding of the health and wellbeing trends of cancer survivors; so it is difficult to gather the evidence required to create new standards of care that every patient can access.

“Our team is working with Australian and international leaders in this area. Our colleagues in the Netherlands for example are world-leaders in understanding cancer survivor needs and implementing services to support them.

“We are currently developing CanLead – a research program to inform a gold-standard measurement that will capture the burden of health and wellbeing gaps in care for cancer survivors.

“Much work has been done internationally to systematise, standardise and in nearly all countries, legislate the routine reporting of a cancer diagnosis. So we can quite easily tell you how many people are living with cancer. What we can’t tell you, is how well they’re living – which this research will help change,” says Professor Ian Olver, Director of the UniSA Cancer Research Institute.