Fear of Cancer Return: Distinct From Depression and Distress

Roxanne Nelson, RN, BSN

February 26, 2018

ORLANDO, Florida — As the number of cancer survivors increases, fear of cancer recurrence (FCR) has become a growing clinical issue — it can be long-lasting and can negatively affect quality of life, use of healthcare services, and adherence to follow-up recommendations.

New findings suggest that it may be distinct from depression and distress.

FCR has recently been defined as "fear, worry, or concern relating to the possibility that cancer will come back or progress." It can be a problem both for patients with curable disease who fear that their cancer will recur and for those with advanced disease who fear progression, explained lead author Sarah Reed, PhD, MSW, MPH, from the University of Illinois in Chicago.

The risk for moderate to high FCR ranges from 22% to 87% among cancer survivors. "The prevalence range is quite large in studies, due to different definitions of fear of cancer recurrence," she explained.

Reed was speaking here at the Cancer Survivorship Symposium (CSS) 2018: Advancing Care and Research.

She presented results from a new study that showed that patients who reported having symptoms of depression or psychological distress were not at significantly higher risk for high or low FCR in comparison with patients who did not have FCR.

"This is the first study, to our knowledge, to provide US population–based estimates on predictors of low and high fear of cancer," she said. She noted that the current literature on FCR is sparse.

"But further research is needed to more clearly differentiate FCR from other constructs and, specifically, anxiety disorders and to identify clinically significant levels of FCR to better target cancer survivors with the highest needs," explained Reed.

At-Risk Patients Identified

The current study was centered around the lack of solid estimates for the prevalence of FCR. Reed and her colleagues also wanted to describe FCR and test its associations with results on validated measures of mental health status in a US population–based sample of posttreatment cancer survivors.

The authors used the Experiences with Cancer Survivorship Supplement of the Medical Expenditure Panel Survey (MEPS), which is a nationwide survey conducted by the Agency for Healthcare Research and Quality, to identify survivors for their study. The MEPS collects comprehensive data on healthcare utilization and expenditures via in-person interviews. In collaboration with other groups, including the American Cancer Society, a targeted questionnaire was developed for cancer survivors.

In a cohort of 1032 survivors, the authors evaluated the sociodemographic, health, and mental health characteristics of cancer survivors by their FCR level (none, low, high). They used survey-weighted population-based estimates to describe the prevalence of key variables.

All patients in the cohort had completed active treatment for a variety of cancer types, and none of the participants had experienced a recurrence at the time of the survey.

Within this group, 34% (n = 358) reported no FCR, 54% (n = 547) reported low FCR, and 11% (n = 127) reported high FCR.

There were no significant associations between depression symptoms and psychological distress for both the low-FCR and the high-FCR groups.

The authors also used the Mental Component Summary (MCS) of the Short-Form 12 Health Survey to measure overall mental health. On that survey, scoring ranges from 0 to 100, with 0 indicating the lowest level of health and 100 indicating the highest level of health. Survivors were at increased risk of reporting high FCR relative to no FCR if they had a low score (≤48) vs a high score (odds ratio = 2.89; 95% confidence interval [CI] = 1.58 - 5.32).

Reed and her team also investigated specific survivor characteristics that may put patients at higher risk for FCR. Characteristics that were associated with a low FCR or a high FCR, as compared to no FCR, were a cancer diagnosis within 1 to 5 years (OR for low FCR, 1.63; OR for high FCR, 1.95), compared with a cancer diagnosis made more than 5 years ago; reporting "good" health status (OR for low FCR, 1.49; OR for high FCR, 1.34), as compared to reporting very good or excellent health status; and reporting late or long-term effects (OR for low FCR, 1.69; OR for high FCR, 4.22).

Those of Hispanic ethnicity and survivors with less than 12 years of education also had a lower risk for FCR.

Questions Remain

In a discussion of the paper, Christopher J. Recklitis, PhD, MPH, director of research at the Perini Family Survivors' Center, Dana-Farber Cancer Institute, Boston, Massachusetts, commented that this research "helps us in a lot of ways."

For one thing, it is a large population-based study and involves many diagnoses. "Up until now, much of the work in this area has been done in breast cancer," he said. "Because of its design, this study provides new information on the fear of cancer recurrence."

Recklitis pointed out that these results are "largely reassuring, as few people reported very frequent fear of recurrence. And it is also not tied to severe mental disorders or depression."

But these data also bring up additional questions.

"One of the important questions is that we don't know how bothered or impaired survivors are by FCR," he said. "MEPS lacks a measure for that."

It is also unknown whether FCR is a sign of anxiety in general, because the MEPS also lacks an anxiety measure.

Another question that needs to be addressed is whether FCR is tied to health behaviors and healthcare utilization. "Does it promote positive behaviors, like getting to their mammogram, or lifestyle changes?" he noted. "Or are they so fearful that they are not doing positive things for their health?"

Dr Reed and Dr Recklitis have disclosed no relevant financial relationships.

Cancer Survivorship Symposium (CSS) 2018: Advancing Care and Research. Abstract 147, presented February 17, 2018.

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