The evolution of fear of cancer recurrence during the cancer care trajectory and its relationship with cancer characteristics,☆☆

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Abstract

Objective

This population-based longitudinal study assessed the prevalence, incidence and evolution of fear of cancer recurrence (FCR) and its relationship with some cancer characteristics in a large sample of patients with mixed cancer sites over an 18-month period.

Methods

A total of 962 patients scheduled to undergo surgery for cancer completed the severity subscale of the Fear of Cancer Recurrence Inventory at the peri-operative period and 2, 6, 10, 14, and 18 months later.

Results

Results indicated that FCR levels were highest at baseline, significantly decreased at the 2-month evaluation and then remained stable throughout the remainder of the study. Between 44.0% and 56.1% of the patients reported a clinical level of FCR during the study, with the highest proportion found at baseline. A relationship was obtained between greater FCR and some indices of poorer prognosis (i.e., diagnosis of head and neck cancer, more advanced cancer, cancer recurrence), as well as with the administration of adjuvant treatment, particularly chemotherapy. Patients with clinical FCR at baseline continued to display clinical levels at all subsequent time points. The incidence rate of clinical levels of FCR was 51.7% overall.

Conclusion

FCR is a highly prevalent and persistent condition. More efforts should be devoted to developing effective treatments for patients with clinical levels of FCR. Early interventions appear particularly relevant in order to prevent the problem from becoming chronic, although patients' acceptability and the efficacy of this approach remain to be demonstrated.

Introduction

Fear of cancer recurrence (FCR) has been defined as: “the fear of the disease recurring or progressing in the same organ or a different area of the body” [1]. Although prevalence rates of FCR have varied considerably (33–96%) [2], [3], notably because of the absence of consensus on its definition and measurement, it is generally agreed that FCR is one of the most common psychological disturbances affecting cancer patients. It has also been documented as the most prevalent unmet need in cancer survivors with 26% to 56% of them reporting moderate to high levels of need for help with FCR [4], [5], [6]. Despite their abundance, published prevalence rates of FCR are indefinite given the non-utilization of a cut-off score to define clinically significant FCR. The cross-sectional nature of most studies is also an important limitation. The evolution of FCR during the cancer care trajectory still needs to be better characterized, in particular its incidence and persistence over time. FCR, especially when severe and persistent, is associated with several negative outcomes including greater general psychological distress, impairments in functioning and lower quality of life, as well as increased use of health care services [7], [8], [9]. Another area which needs further exploration is the relationship of FCR with cancer characteristics. This is important to better understand the etiology of FCR and identify subgroups of patients who are at a higher risk and who should be screened more routinely for clinical levels of FCR. Consistent findings linking FCR with some demographics (e.g., younger age, having young children) and psychological factors (e.g., anxiety, depression) [2], [10] have been reported but relationships of FCR with cancer characteristics have led to more mixed findings. Prostate cancer patients reported lower levels of FCR compared to patients with breast, lung and colorectal cancer in one study [3], while greater FCR was observed in women with breast cancer than those with endometrial cancer in another investigation [11]. Cancer stage has not been consistently associated with FCR severity [2], [10]. However, there is a paucity of sufficiently large studies conducted with various cancer sites and stages permitting comparisons across them. Regarding cancer treatments, there is some evidence showing greater FCR scores in breast cancer patients treated with chemotherapy but no other differences have consistently emerged [2], [10]. Finally, recent findings indicate that patients experiencing a cancer recurrence have greater FCR [12], [13], but the direction of this relationship has yet to be determined prospectively [10] to determine whether patients with a cancer recurrence have pre-existing elevated FCR because they know they have a poorer prognosis or if increased FCR is a reaction to having a recurrence.

This longitudinal investigation, conducted in a large sample of cancer patients with mixed cancer sites, aimed at assessing the evolution of FCR up until 18 months following the perioperative period, at determining to what extent FCR levels are influenced by cancer characteristics such as sites, stages, treatments and a diagnosis of cancer recurrence and at estimating the prevalence, incidence, and persistence of clinical FCR during the study using an empirically-validated cut-off score. No hypothesis was stated for descriptive goals, but greater levels of FCR were expected in patients with a poorer prognosis.

Section snippets

Recruitment

This is a secondary analysis of an epidemiological study of insomnia comorbid with cancer [14], [15]. Inclusion criteria were: (1) confirmed first diagnosis of non-metastatic cancer; (2) scheduled to receive curative surgery; (3) between 18 to 80 years of age; and (4) able to read and understand French. Exclusion criteria were: (1) administration of neoadjuvant cancer treatment (before surgery; e.g., chemotherapy); (2) upcoming surgery was part of brachytherapy for prostate cancer (because it is

Evolution of FCR in the Total Sample

Fig. 2a shows mean FCRI-S scores obtained at each time point in the total sample. An overall significant time effect was found, F(5, 3877) = 38.10, p < .001, with a significant reduction from T1 to T2, t(3877) = 9.71, p < .001. Only at baseline did the mean score exceed the clinical threshold. Between 44.0 and 56.1% of the patients reported clinical FCR during the study, with the highest proportion obtained at T1 (Fig. 2b). A significant time effect was observed, F(5, 3877) = 10.47, p < .001, as well as a

Discussion

To our knowledge, this is the first large-scale longitudinal study assessing the prevalence of clinical FCR using an empirically-based criterion and its evolution during the cancer care trajectory. We found elevated prevalence rates varying between 44% and 56%, which were lower than some of the previously reported rates. Indeed, studies have reported a wide range of prevalence rates of FCR, from as low as 33% to as high as 96%, mainly because of the use of various measures and criteria, which

Conflict of interest

The authors have no competing interests to report.

Acknowledgments

This research was supported, in part, by a grant from the Canadian Institutes of Health Research (MOP-69073) and a research scientist award from the Fonds de la recherche en santé du Québec awarded to the first author.

The authors wish to acknowledge the important contribution of Valérie Tremblay, Lucie Casault, Caroline Desautels, Geneviève Dumont, Dave Flanagan, Nathalie Gagnon, Catherine Gonthier, Geneviève Laurent, Marie-Ève Le May, Julie Maheux, Marie-Esther Paradis, Sylvie Perron, Julie

References (31)

  • MF Clayton et al.

    Testing a model of symptoms, communication, uncertainty, and well-being, in older breast cancer survivors

    Res Nurs Health

    (2006)
  • T Skaali et al.

    Fear of recurrence in long-term testicular cancer survivors

    Psychooncology

    (2009)
  • B Thewes et al.

    Fear of cancer recurrence in young women with a history of early-stage breast cancer: a cross-sectional study of prevalence and association with health behaviours

    Support Care Cancer

    (2012)
  • JV Crist et al.

    Factors reported to influence fear of recurrence in cancer patients: a systematic review

    Psychooncology

    (2012)
  • AB Kornblith et al.

    Long-term psychosocial adjustment of older vs younger survivors of breast and endometrial cancer

    Psychooncology

    (2007)
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    These results were presented, in part, at the annual meeting of the Canadian Association of Psychosocial Oncology, April 2012, Vancouver, BC, Canada.

    ☆☆

    Department where the work was conducted: Centre hospitalier universitaire de Québec (CHU de Québec).

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