Background: Fear about cancer recurring or progressing (FCR/P) is a key concern reported by cancer survivors and caregivers. Whilst advances in understanding survivor FCR have been made, less attention has been paid to caregiver FCR experiences. Measures of caregiver FCR have relied heavily on survivor experiences. However, findings from qualitative interviews highlight caregiver conceptualisations differ in important ways from those of survivors.
Aim: To develop and evaluate the psychometric properties of a caregiver specific FCR/P measure, guided by the COSMIN taxonomy.
Methods: In phase 1, items were generated from previous caregiver instruments, a systematic review (k= 13) and interviews with caregivers (n= 24). Items were also reviewed by experienced psych-oncology researchers with expertise in FCR. In phase 2, cancer caregivers completed an online survey including demographic questions, the caregiver FCR/P instrument and related measures. Participants were recruited through cancer support organisations, social media advertisement and Prolific. Participants completed the survey twice, two weeks apart. Factor structure will be determined by exploratory factor analysis (EFA). Discriminatory power assessed against participants' age and patient clinical characteristics.
Results: Generated items were reviewed and refined, resulting in 49-items in four thematic categories; (a) Impact of FCR/P; (b) Behaviours; (c) Content of fears; (d) Experience of FCR/P. We aim to recruit a total of 400 participants, to date 280 participants have been recruited. The questionnaire will be factor analysed, using EFA. Convergent and divergent validity will be assessed against existing measures of fear of cancer recurrence, anxiety, depression, death anxiety and metacognition. Test-retest reliability will be reported.
Conclusions: We present the development and validation of a psychometrically robust and theoretically informed measure of caregiver FCR/P. This instrument will facilitate measurement of caregiver FCR experiences and consequences and in turn help to inform development of psychosocial interventions tailored to the specific needs of cancer caregivers.