Development and validation of the CARE-FCR: A caregiver-specific measure of fear of cancer recurrence and progression.

Abstract

Fear of cancer recurring or progressing (FCR) is a concern reported by people living with cancer and caregivers alike. Whilst advances in survivor FCR have been made, less is known about caregiver FCR. As a result, measurement of caregiver FCR has relied on instruments developed for survivor populations. Findings from qualitative research indicate caregiver experiences of FCR differ. This study aimed to develop and evaluate the psychometric properties of a caregiver specific measure of FCR (CARE-FCR). Four-hundred and thirty-eight caregivers (56% female, Mage= 50.53years, SD=17.38) completed the online survey including demographic questions, information about care provided, the person they care for, as well as the CARE-FCR. Convergent validity was assessed using pre-existing measures of fear of recurrence and progression, depression, anxiety, death anxiety and meta-cognitions. The extraversion dimension of the Big Five Personality Trait questionnaire was used to assess divergent validity. The survey was completed 2weeks later to assess test-retest reliability. Exploratory factor analysis (EFA) was used to determine factor structure, followed by confirmatory factor analysis. EFA indicated a 3-factor structure: progression, recurrence, and communication. Evidence for convergent, divergent, and test-retest reliability was adequate. Internal consistency for the CARE-FCR was strong, overall Cronbach's α=0.96 (progression=0.94, recurrence=0.92 and communication=0.78). We present a theoretically informed and psychometrically robust measure of caregiver FCR. The CARE-FCR facilitates quantification of caregiver FCR, capturing unique aspects specific to this population.