Introducing FCR6-Brain: Measuring fear of cancer recurrence in brain tumor patients and their caregivers

Background Fear of cancer recurrence (FCR) is a psychological consequence of cancer diagnosis that impacts quality of life in neuro-oncology. However, the instruments used to assess FCR have not been tested for validity in patients with brain tumors. The present study explored the psychometric properties of a brief FCR scale in patients with primary brain tumor (PBT) and their caregivers. Methods Adult patients with PBT (n = 165) and their caregivers (n = 117) completed the FCR–7-item scale (FCR7) and measures of psychological functioning. Exploratory factor analyses (EFA) were conducted for both patient and caregiver FCR7. Convergent validity, prevalence, the difference between FCR in patients and caregivers, and relationships with relevant medical and demographic variables were explored. Results EFAs revealed a single factor with one item demonstrating poor loading for both patients and caregivers. Removal of the item measuring hypervigilance symptoms (checking for physical signs of tumor) greatly improved the single factor metrics. The amended scale (FCR6-Brain) demonstrated good convergent validity. Caregiver FCR was significantly higher than patient. Clinical guidance to identify clinically significant FCR was introduced. Age, gender, and time since diagnosis were related to FCR, with higher FCR in younger women more recently diagnosed. Conclusions The FCR6-Brain is the first validated instrument to assess FCR in this population and should be used to identify individuals at risk for FCR and guide development of future psychotherapeutic interventions. This study highlights the distinct characteristics of FCR in neuro-oncology. Symptoms of hypervigilance in PBT patients need further investigation.