Fear of cancer recurrence (FCR) is one of the most common and distressing concerns cancer survivors have. For many, it can be debilitating and significantly impact their wellbeing in everyday life.

However, FCR is not always easy to identify in practice as it is not closely related to cancer type, stage or treatment, and there can be reluctance from both survivors and clinicians to discuss it. Furthermore, FCR is not usually part of standard post-treatment assessments in cancer care. 

But new research led by UNSW Sydney shows a simple screening tool may help with early identification of FCR in cancer survivors. The single-item measure – a simple question asking survivors to rate their level of FCR on a 0-10 scale – could inform further development of the patient-reported measures system currently in place across NSW and similar systems used in cancer care globally.

According to the researchers, doing so may help reduce the significant burden of FCR on mental health, quality of life and healthcare costs. The study was supported by a Cancer Institute NSW Career Development Fellowship, and the findings are published today in the journal Psycho-Oncology.

“We have well-validated and established ways of identifying FCR, but they’re too long for initial screening in clinical practice,” says the study's lead author, Dr Ben Smith, a Senior Research Fellow at South West Sydney Clinical Campuses, UNSW Medicine & Health. “A single-item measure is a tool that can be used to briefly screen for FCR and fit within the patient-reported outcome measures systems we already use to identify other symptoms and side-effects post-treatment.”

A prevalent unmet need

More than 50 million people are living with and beyond cancer worldwide. It’s estimated over half of all cancer survivors experience clinically significant FCR, associated with psychological distress, poorer quality of life and greater healthcare use.

“Getting help to cope with FCR is a top reported unmet need by cancer survivors, above pain, fatigue and other physical symptoms,” Dr Smith says. “The fear can cause considerable distress and can significantly impact the quality of life and future planning for cancer survivors and their loved ones.” 

Much of the research into FCR to date has focused on establishing a set of viable interventions to treat FCR. However, a significant gap still exists in screening and treatment pathways.

Read more: A digital tool is helping cancer survivors cope with fear of recurrence

“Without treatment, FCR may persist for many years, even in survivors with good prognoses,” Dr Smith says.

“We have effective evidence-based interventions for treating FCR, such as the one-on-one therapist-delivered program ConquerFear, and innovative digital treatments like iConquerFear aiming to increase access to FCR treatment currently being trialled. But they will go underutilised if we can’t identify the people who need them in the first place.”

Identifying fear of cancer recurrence early 

For the research, the team tested the ability of the single-item FCR screening tool to aid in identifying FCR in routine cancer care. They analysed data from 107 adult survivors of different types of cancer recruited from two cancer care centres in South Western Sydney Local Health District, and the Peter MacCallum Cancer Centre as part of Fear-Less, a stepped-care program for people with cancer experiencing FCR. 

Comparing participants’ scores from the single-item measure with their results from a Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF) measure – a well-established scale for in-depth assessment of FCR in research – they found the single-item measure effectively measured FCR and could identify cancer survivors with clinically significant FCR needing further attention.

“The single-item test asks survivors to rate their fear of recurrence on a zero to 10 scale – which is an easy question for patients to interpret – and gives an accurate measure of FCR comparable to more comprehensive, lengthier measures,” Dr Smith says. “The findings suggest single-item FCR measures are a useful case-finding tool to identify whether a person needs help with FCR early, and we think it is feasible for clinicians to start using it in healthcare settings.”

When implemented in practice, the researchers note that the single-item measure would ideally be followed by secondary tools to assess FCR severity and select the appropriate interventions for patients from the options available.

“We would like to see more data collected about how it works in the routine care setting, and we think it’s ready for that stage,” Dr Smith says. “We would also like to see how it works with people from different cultural and language groups who may experience and report FCR differently.”