Fear of cancer recurrence (FCR) is prevalent among cancer survivors but may only be experienced by a minority of patients, according to findings from a nationally representative sample presented at the 2018 Cancer Survivorship Symposium.
FCR is a rapidly expanding field of research, and it was only recently formally defined as “Fear, worry, or concern relating to the possibility that cancer will come back or progress,” said Sarah C. Reed, MPH, MSW, PhD, Assistant Professor, Jane Addams College of Social Work, University of Illinois at Chicago.
Fear of recurrence among cancer survivors is typically characterized by high levels of worry and intrusive thoughts, maladaptive coping, excessive distress, difficulties in making future plans, and functional impairment.
“Prior to this definition, there were several definitions being used, and several ways of measuring FCR,” Dr Reed said. “Because of that, the prevalence range among cancer survivors is quite large, with systematic reviews reporting moderate-to-high FCR falling somewhere between 22% and 87%.”
Dr Reed and colleagues designed a study to describe the prevalence of FCR, and test its associations with validated mental health status measures in a US population–based sample of posttreatment cancer survivors.
The investigators used data from the MEPS (Medical Expenditure Panel Survey) Experiences with Cancer Survivorship Supplement to examine the sociodemographic, health, and psychological characteristics of cancer survivors by their level of FCR (ie, none, low, or high).
The study sample included 1032 cancer survivors aged ≥18 years who had completed active treatment for any cancer diagnosis at any stage, and with no reported history of cancer recurrence.
Fear of Recurrence versus Depression or Distress
Of the 1032 cancer survivors, 34% reported no fear of recurrence, 54% reported low fear levels, and 11% reported high fear levels. Survivors with a score of ≤48 on the Mental Component Summary of the 12-Item Short-Form Health Survey were at increased risk for reporting high levels of fear of recurrence. However, the presence of depressive symptoms or psychological distress among cancer survivors did not significantly increase the risk for reporting high or low fear compared with no fear, Dr Reed reported.
The characteristics associated with an increased risk for FCR included 1 to 5 years since diagnosis versus more than 5 years, good health status compared with very good or excellent health status, and the existence of late- and long-term side effects.
“I think these findings build on some of the literature suggesting that FCR is distinct from depression and distress,” Dr Reed said. “That was certainly true in our data set.”
This is the first study to provide estimates on predictors of low fear of recurrence and high fear of recurrence among cancer survivors in the United States, according to Dr Reed. She warned, however, that the 1 question used in the study—“How often do you worry that your cancer may come back or get worse?”—is not a validated measure.
She hopes that future research will focus on more clearly differentiating fear of recurrence from other constructs, specifically anxiety disorders, and on identifying clinically significant levels of FCR to better target cancer survivors with the highest needs.
“More specifically, at what point is it interfering enough that survivors need attention and targeted interventions to help them get better, and at what point should we intervene?” she asked.
Commenting on this study, Christopher J. Recklitis, PhD, MPH, Director of Research, Perini Family Survivors’ Center, Dana-Farber Cancer Institute, Boston, said that because the population of cancer survivors in the United States has grown exponentially, interest in fear of recurrence has grown with it.
He praised the diagnostic variability in the study, noting that most research in this area to date has been conducted on patients with breast cancer.
“To me, the results are largely reassuring,” he said, adding that only approximately 11% of participants reported frequent FCR, which was not found to be linked to severe mental disorders or depression. Rather, FCR appears to be linked to “rational” or “expectable” indicators of worry.
Outstanding issues that should be addressed include assessing the actual burden and impairment associated with FCR, and figuring out whether such fear is a sign of anxiety in general, Dr Recklitis said.
“Perhaps most important, we don’t know if FCR is tied to health behaviors and utilization,” he said. “Is this fear getting people to go to their mammograms and do their exercises, or are they so fearful that they’re not doing things that would promote positive health?” Dr Recklitis said that more work should focus on clarifying the concept of FCR.
“The current definition is quite broad, so broad it may not be useful,” he said. “We psychosocial people get a lot of mileage out of saying things are multidimensional and multifactorial, but we need to pin things down. If you can’t define it clearly, you can’t measure it, and I think it’s the definition we need to tweak moving forward.”