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Clinicians treating patients who live with or survive serious diseases such as cancer are familiar with the concept of fear of illness recurrence (FIR). FIR has been associated with greater avoidance of illness reminders, including medical appointments, ignoring symptom changes, social withdrawal and increases in anxiety and decreases in quality of life and mood.

But as a Concordia research team led by Mark Ellenbogen, a professor in the Department of Psychology, points out in a new study published in the journal BMC Psychiatry, there is little research on FIR among people with psychiatric conditions. This includes major depressive disorder (MDD), which affects up to 300 million people worldwide and is known to have a recurrence rate between 50 and 85 per cent.

“Many of our patients talk about depression in a very cyclical sense, with key moments or dates throughout the year that would scare them because they were associated with periods when they suffered from acute depression,” says Stephanie Gumuchian, a PhD candidate in the Department of Psychology and the paper’s lead author.

“This fear that patients feel while they are in remission from depression, including worrying about the possibility of their depression coming back, is something we frequently discuss in our clinical work.”

Fear and coping vary from person to person

Gumuchian and her fellow PhD candidate Ariel Boyle conducted semi-structured qualitative interviews with 30 participants about their fear of depression recurrence (FoDR), all of whom had experienced at least one major depressive episode but were currently in remission. 

Of the 30 participants, 22, or roughly three-quarters, reported having some form of FoDR. The frequency, intensity and duration of these feelings of fear varied. Over half — 53 per cent — reported having FoDR on a weekly or monthly basis. And while 66 per cent reported the fears lasting a few minutes or hours, 17 per cent said they could persist for days.

Respondents with strong or persistent fears of recurrence said their fears were most commonly triggered by re-experiencing symptoms similar to previous major depressive episodes and facing reminders of past episodes or difficult life experiences. Academic or work stress, interpersonal conflict, feeling alone or unsupported, periods of transition and feelings of loss, grief or other negative life events were all common triggers of FoDR.

However, not all participants responded to those fears the same way.

A 57 per cent majority of respondents associated FoDR with increased anxiety and 47 per cent with negative mood changes. Furthermore, 37 per cent described a “snowball effect” where FoDR led them to become hypervigilant to symptom changes, which increased their anxiety and feelings of being overwhelmed and led them to believe that they may be at a higher risk of having another depressive episode.

“They would fixate on these fears and then behave in a certain way that, as clinicians, we could identify as possible precursors to their entering a depressive episode,” Gumuchian notes.

Others, however, had the opposite reaction. Some 40 per cent of respondents said FoDR led them to increase their mental health care by proactively trying to address it. In almost a third of cases, FoDR led to increased confidence and greater awareness of their mental health needs.

“They would do everything in their power to address their fears. They would reconnect with their mental health providers or their friends, visit their families and use coping strategies that they knew had been effective in previous depressive episodes.”

Feeling competent and productive, experiencing positive social interactions, distractions and feeling supported were all associated with reduced FoDR, the researchers write.

Working on detection tools

The researchers acknowledge much more work needs to be done to better understand FoDR. To answer these questions, the researchers are actively working on the second stage of this research project, where they have developed a questionnaire to measure FoDR and are in the process of validating it. The questionnaire will allow the team to conduct rigorous studies testing the hypothesis that high levels of certain aspects of FoDR might increase one’s risk for future depressive episodes and negatively impact health and quality of life. Clinically, the benefits are clear:

“Eventually we hope that we can use our FoDR questionnaire in a clinical setting, so that it can give us a clear sense of people’s fears early on, or in a primary care setting where a physician can screen for these fears,” she says. “Ideally, it could be used to identify the individuals who may be most at risk of future recurrence.”

This study was supported by the Canadian Institutes of Health Research (CIHR) and the Social Sciences and Humanities Research Council (SSHRC).

Read the cited paper

Fear of depression recurrence among individuals with remitted depression: a qualitative interview study

— By Patrick Lejtenyi

— Concordia University

— @ConcordiaUnews

— AB

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