Abstract

Purpose: Previous studies suggest one-third of breast cancer survivors (BCS) experience elevated fear of cancer recurrence (FCR) and that it remains stable. Most studies include long assessment intervals and aggregated group data. This study aimed to describe the individual trajectories of FCR when assessed monthly using both a statistical and descriptive approach.Methods: Participants were curatively-treated BCS 0–5 years post-surgery. Questionnaire data were collected monthly for 12 months. Primary outcome was FCR [Cancer Worry Scale (CWS)]. For the descriptive approach, 218 participants were classified as low (CWS ≤ 13 at each assessment), high (CWS ≥ 14 at each assessment), or fluctuating FCR (CWS scores above and below cut-off). Latent class growth analysis (LCGA; n = 377) was conducted to identify trajectories over time.Results: Around 58% of the women reported fluctuating CWS scores, 22% reported a consistently high and 21% consistently low course. Results of the LCGA confirmed the three-class approach including a stable high FCR group (13%), a low FCR group (40%), and a moderate FCR group (47%). Both the moderate and low scoring groups reported declining scores over time. Younger patients, higher educated patients, and those less satisfied with the medical treatment were more likely to belong to the moderate or high trajectory. Conclusion: Assessed monthly, the majority of BCS report fluctuating levels of FCR. Stepped-care models should assess FCR on multiple occasions before offering tailored interventions.

Highlights

  • Fear of cancer recurrence (FCR) is one of the most prevalent symptoms among breast cancer survivors (BCS), with a high need for support (Armes et al, 2009; Boyes et al, 2012; Willems et al, 2016)

  • This study aimed to describe the individual trajectories of FCR when assessed monthly using both a statistical and descriptive approach

  • This study found that FCR scores declined significantly between the peri-operative period and 6 months after surgery, but that FCR scores plateau at approximately 4 months

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Summary

Introduction

Fear of cancer recurrence (FCR) is one of the most prevalent symptoms among breast cancer survivors (BCS), with a high need for support (Armes et al, 2009; Boyes et al, 2012; Willems et al, 2016). The reported prevalence of at least moderate FCR among Dutch BCS ranges between 31 and 56% (Van den Beuken-van Everdingen et al, 2008; Custers et al, 2014). A proportion of long-term BCS continue to experience FCR many years after their cancer diagnosis. For example in a large sample (n = 2,671) of German BCS, 17% reported moderate to high levels of fear of recurrence when surveyed an average of 8 years after diagnosis (Koch et al, 2014). While some attention has been given to studying the course and trajectories of distress (Henselmans et al, 2010; Lam et al, 2012), mental and physical functioning (Helgeson et al, 2004), and depressive symptoms (Stanton et al, 2015) among BCS, the course of FCR has received relatively little attention in the literature to date

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