Fear of cancer returning is not only stressful for patients, it also costs the health care system money

Cancer survivors who worry a lot about their cancer returning make more visits to their GP and specialist doctors, according to a new review published in the journal Psycho-Oncology. Lead researcher Jake Williams from the University of Sydney explains that these extra visits may place an unnecessary burden on the healthcare system.

Cancer survivors with high fear of cancer recurrence were also more likely to visit the outpatient department and emergency room. However, there were mixed results for visits to complementary and alternative medicine providers, participation in screening programs and the use of medications.

Mr Williams says the mixed results might be because fear of cancer recurrence causes different behaviours in different people. “Some people will seek additional scans and appointments to provide reassurance that their cancer hasn’t returned, while others will try to avoid seeing doctors because it reminds them of their cancer.”

All previous research into the relationship between fear of cancer recurrence and use of healthcare services was brought together and reviewed for the first time in the study, which also looked at the evidence for whether cost-effective treatments for fear of cancer recurrence were available.

The research team came from the University of Sydney and the University of New South Wales and brought together researchers with psycho-oncology and health economics expertise for a multidisciplinary approach to the research.

Some people will seek additional scans and appointments to provide reassurance that their cancer hasn’t returned, while others will try to avoid seeing doctors because it reminds them of their cancer.” Jake Williams

Around 50% of cancer survivors experience significant fear of cancer recurrence, regardless of the probability of their cancer returning. This means around half a million Australians are struggling with fear of cancer recurrence.

While low levels of fear around their cancer returning may encourage patients to remain vigilant for early signs of recurrence, high levels are characterised by persistent worry, preoccupation, and hypervigilance for symptoms. Patients with high levels of fear of cancer recurrence experience psychological distress as well as lower quality of life. They also tend to be less satisfied with their healthcare.

Study author and fear of cancer recurrence expert, Dr Ben Smith, says “while extra visits or tests may provide temporary reassurance, they also increase the costs of care and may ultimately reinforce the need for vigilance around symptoms and recurrence, feeding into a cycle of fear and reducing quality of life in the longer term.”

This use of additional healthcare resources has also been seen in research involving cancer patients with other mental health conditions, such as anxiety, as well as in people with other chronic diseases such as diabetes who also have anxiety or depression.

It can be difficult to assess what amount of healthcare use is excessive. Self-monitoring of symptoms is an important part of detecting any cancer recurrence early, because this reduces the need for more invasive and costly treatments and improves the likelihood of positive response to treatment. But this study finds people with high levels of fear of cancer recurrence are more likely to access medical care than mental health support, which may not be the most appropriate or efficient care to address their underlying concerns.

Medical professionals can encourage cancer survivors with persistent and severe fear of cancer recurrence, particularly those who make repeated unscheduled appointments, to seek psychological support. Validated screening tools, such as the 9-item Fear of Cancer Recurrence Inventory-Short Form are freely available to identify and monitor fear of cancer recurrence.

Several psychological and physical treatments for fear of cancer recurrence have been suggested, including teaching cognitive behavioural skills, relaxation, meditation and physical exercise.

This study found that while effective psychological interventions for fear of cancer recurrence are available, there has been very little research into whether these represent good value for money. The few studies done suggest some interventions could be cost-effective and Dr Alison Pearce, the study’s health economist, explains “this means it would be worth the additional expense of providing these treatments to get the improvements we see in patients’ fear of cancer recurrence or quality of life.”

…It would be worth the additional expense of providing these treatments to get the improvements we see in patients’ fear of cancer recurrence or quality of life, Alison Pearce

Only one treatment was identified in the study that is likely to be cost effective at both reducing fear of cancer recurrence and improving quality of life: The ConquerFear treatment, developed in Australia by the Psycho-Oncology Co-operative Research Group (PoCoG) uses contemporary cognitive behavioural therapy approaches to address fear of cancer recurrence.

“The ConquerFear therapy focusses on changing how people engage with thoughts about recurrence. If implemented, these treatments may both improve cancer survivors’ mental health and reduce potentially unnecessary healthcare usage” explains Dr Smith, who was involved in the randomised controlled trial of ConquerFear. Efforts to further enhance the accessibility and cost-effectiveness of the ConquerFear treatment, such as adapting it to an online self-management intervention, iConquerFear, are currently underway.

When looking at the cost effectiveness of treatments, the study also found that even though effective treatments might reduce GP and specialist healthcare visits (and therefore save the health system money), this was not considered in the studies of cost-effectiveness.

Dr Pearce says, “future research that looks at the costs of providing treatment in relation to both patient outcomes and their use of health care resources would provide better evidence to guide which treatments represent the best investment for health services.”

Other costs that tended to be left out were the out-of-pocket costs faced by the patient, even though we know from other research that these can be hefty.

The possibility of cancer returning comes with a mental health cost for cancer survivors, but there is also a hidden cost to the healthcare system. Half a million Australia patients struggle with this, despite the existence of effective treatments that could both help patients and save the health system money. Further investment is needed in the implementation and evaluation of cost-effective treatments in routine care to address the psychological and financial burden of fear of cancer recurrence.