One of the most common worries cancer survivors have after treatment ends is that their cancer will return. For many, this fear can be debilitating and can significantly affect their wellbeing and ability to enjoy life. Now, a team led by UNSW Sydney researchers is investigating ways to increase access to much-needed treatment for fear of cancer recurrence through e-health.

Dr Ben Smith, Cancer Institute NSW Career Development Fellow and Senior Research Fellow at South West Sydney Clinical School, UNSW Medicine & Health, and Dr Adeola Bamgboje-Ayodele at the Ingham Institute for Applied Medical Research led a national team of clinicians, researchers and cancer survivors to develop a digital intervention to help survivors manage their post-treatment fears.

The program, iConquerFear, is a self-guided online tool for managing fear of cancer recurrence. It is an adaptation of ConquerFear, a therapist-delivered treatment for fear of recurrence – originally developed by the Psycho-Oncology Co-operative Research Group, a national cancer clinical trials group – which has been shown to be effective in reducing psychological distress.

The goal of iConquerFear is to empower survivors with different strategies and techniques to manage the fear of recurrence and develop actions that align with their values. Throughout five bite-sized modules, participants complete interactive exercises about goal setting, attention training and mindfulness, giving them a range of practical tools to assist in reducing unhelpful thoughts about recurrence.

“Worries about recurrence are rational and normal, and it’s important to understand that they can’t just be eliminated,” says Dr Smith. “The iConquerFear approach is about changing how people engage with their thoughts about recurrence. It’s about helping them to not get caught up in the negative thoughts that impact their wellbeing.”

Helping cancer survivors fear less 

More than 50 million people are living with and beyond cancer worldwide. Approximately half of all cancer survivors experience clinically significant fear of recurrence associated with psychological distress, poorer quality of life and greater healthcare use. 

“Getting help to cope with a fear of cancer recurrence is a cancer survivor’s top unmet need, above pain, fatigue and other physical symptoms,” Dr Smith says. “This fear causes considerable distress and impacts quality of life, disrupting their ability to engage with day-to-day activities, loved ones and planning for the future.”

Various therapist-delivered interventions for fear of recurrence have demonstrated effectiveness in helping survivors manage their worries. However, such services can have many barriers, including distance and resourcing.

“Existing interventions, while effective, are inaccessible to many Australian cancer survivors, particularly those in rural and remote areas,” Dr Smith says. “The health system is also under a lot of strain to address the mental health burden with insufficient resourcing.”

In addition, face-to-face isn’t always a treatment model all patients like to, or are able to, engage in, Dr Bamgboje-Ayodele says. “So, there’s a growing need for more scalable digital interventions to address this significant gap.”

According to Dr Smith, self-guided digital interventions have significant promise to address unmet fear of recurrence-related needs and deliver timely, accessible treatment unconstrained by patient location. But many existing digital interventions have demonstrated limited engagement and efficacy to date.

“It’s an emerging field, but current digital interventions for fear of recurrence either don’t use the cognitive behavioural strategies that we know are particularly effective in reducing fears or haven’t been designed with as much input or feedback from cancer survivors,” he says.

‘Getting help to cope with a fear of cancer recurrence is a cancer survivor’s top unmet need, above pain, fatigue and other physical symptoms.’

Dr Bamgboje-Ayodele says, with its focus on user experience, interactive exercises and personalised feedback, iConquerFear has the potential to service fear of recurrence-related needs, be more accessible and more scalable than existing treatments.

“Participants feel like they’re managing their fears and are being supported to do that as they go through these activities and get tailored feedback,” Dr Smith says. “The program is designed with relatable examples to engage users while supporting behaviours such as self-examination and follow-up that could help minimise the risk of their cancer coming back.”

The team recently conducted a study to investigate the potential of the iConquerFear intervention. It found that most of the 54 breast cancer survivors who participated showed a decrease in fear of recurrence severity immediately after participating in the program and three months post-intervention. About a quarter of the participants also reported clinically significant improvements in their reduction of fear of recurrence.

Although participation in later modules of the program declined somewhat, Dr Smith says the initial uptake and engagement with iConquerFear demonstrated its promise as an effective intervention tool for fear of recurrence.

“We saw strong initial uptake and engagement and promising reductions in fear recurrence – equivalent in size to what we saw in the face-to-face,” Dr Smith says. “It suggests that digital interventions can actually improve access to psychosocial support and facilitate self-management by survivors.”

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In their next study, the team is partnering with Ovarian Cancer Australia to conduct a pilot randomised control trial to investigate iConquerFear’s effectiveness further before embarking on a full-scale rollout.

The project is also attracting international interest from therapeutics companies. Blue Note Therapeutics, a US-based digital therapeutics prescription company, recently licensed the iConquerFear and ConquerFear programs to develop a product for the North American market.

“We are open to exploring commercial models with partners that would maximise the accessibility and impact of iConquerFear in Australia and beyond,” Dr Smith says.