Cure is not enough: surviving cancer in Australia

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Childhood cancer survival rates have never been higher in Australia. Today, about 80% of childhood cancer survivors thrive into early adulthood and beyond.

However, many survivors will experience physical and/or psychological impacts from the treatments they received to cure their cancer. In fact, 2 out of 3 survivors will develop a health condition (referred to as a ‘late effect’) later in life, such as infertility, cognitive difficulties, dental problems, or anxiety and depression. Importantly, late effects are often preventable or treatable. For this reason it is important that people affected by childhood cancer, especially those at higher risk of late effects, receive long term medical care. However, delivering this care this remains a challenge. The majority of survivors lose contact with their cancer centre after their treatment and do not receive adequate follow-up care.

Survivorship care plans are emerging as one avenue to improve survivors’ follow-up care. A survivorship care plan is a written document that provides details about an individuals’ diagnosis, treatment, information about potential late effects, and recommendations for ongoing follow-up care. While research has found that survivorship care plans have numerous benefits, they are not commonly used.

In order to better understand the issues around follow-up care and what may be done to improve it, the Behavioural Sciences Unit is currently conducting the ‘Long Term Follow-Up’ study. This involves surveying survivors and their families across Australia and New Zealand about their experience of follow-up care. From this research we are hoping to develop a formal set of guidelines for survivorship care.

We would love to hear about your experience of follow-up care. If you are interested in completing a survey or interview, please click here for more information, or contact Christina Signorelli or Rebecca Hill.

Want to learn more about Survivorship Care Plans?
Our team leader A/Prof Claire Wakefield recently spoke about survivorship care plans in a webinar hosted by Cancer Council New South Wales, which you can view here. To learn more about Survivorship Care Plans and for survivorship resources, visit the National Cancer Institute website.