Experiences of fear of recurrence in patients with sarcoma

Abstract

Background: Fear of cancer recurrence (FCR) is often described as the most distressing consequence of cancer and has a negative impact on quality of life. There have been few investigations into the FCR in patients with sarcomas. We sought to explore the patient's FCR after a sarcoma diagnosis to determine when these fears were presented and the strategies patients used to address these fears. Methods: This was a secondary analysis of qualitative semi-structured interview data from patients with sarcoma, as part of a study to develop a patient-reported outcome measure. This study included 121 patients from across the United Kingdom aged 13–82 years. Telephone and face-to-face interviews focused on the experiences of living with and beyond a sarcoma diagnosis, based on the domains of quality of life (physical, emotional, and social well-being). A secondary analysis was performed using the Common-Sense Model. Results: The following four key themes were identified: triggers for FCR (symptoms and events), discussion of FCR, consequences of FCR (negative impact on quality of life), and strategies used to deal with FCR. Conclusion: Patients with sarcoma reported a FCR at different stages of treatment and how these fears played a role in their daily lives. Despite these experiences, the identification and management of FCR have not been reported as a core component of routine clinical practice.

The Sarcoma Assessment Measure (SAM): Preliminary Psychometric Validation of a Novel Patient-Reported Outcome Measure

“…This concurs with previous literature demonstrating a prevalence of anxiety and depression in patients with sarcoma in a fifth to a third of patients [36,37]. We have also identified fear of recurrence as having a significant impact on patients' lives [5], which was higher than reports in other types of cancer [7]. Given the seemingly higher weighting patients place on the emotional impact of sarcoma, and the relatively superficial exploration of this in the literature, this is an area that warrants more detailed investigation.…”

The Sarcoma Assessment Measure (SAM): Preliminary Psychometric Validation of a Novel Patient-Reported Outcome Measure

“…This concurs with previous literature demonstrating a prevalence of anxiety and depression in patients with sarcoma in a fifth to a third of patients [ 41 , 42 ]. We have also identified fear of recurrence as having a significant impact on patients’ lives [ 5 ], which was higher than reports in other types of cancer [ 7 ]. Given the seemingly higher weighting patients place on the emotional impact of sarcoma, and the relatively superficial exploration of this in the literature, this is an area that warrants more detailed investigation.…”

“…The high risk of developing metastases and recurrence has resulted in treatment pathways in many countries, including the United Kingdom (UK), to comprise annual follow-up often accompanied with a scan. Repeated hospital attendances have a significant impact on patients’ emotional well-being [ 5 ], as these require patients to revisit the experiences they had at diagnosis [ 6 ]. For this and other reasons, fears of sarcoma recurrence are common [ 7 ].…”