Caregiver fear of cancer recurrence: A systematic review and meta‐analysis of quantitative studies

Abstract

ObjectiveFear of cancer recurrence (FCR) is reported by both cancer survivors and caregivers however less is known about caregiver FCR. This study aimed to (a) conduct a meta‐analysis to compare survivor and caregiver FCR levels; (b) examine the relationship between caregiver FCR and depression, and anxiety; (c) evaluate psychometric properties of caregiver FCR measures.MethodsCINAHL, Embase, PsychINFO and PubMed were searched for quantitative research examining caregiver FCR. Eligibility criteria included caregivers caring for a survivor with any type of cancer, reporting on caregiver FCR and/or measurement, published in English‐language, peer‐review journals between 1997 and November 2022. The COnsensus‐based Standards for the selection of health status Measurement INstruments (COSMIN) taxonomy was used to evaluate content and psychometric properties. The review was pre‐registered (PROSPERO ID: CRD42020201906).ResultsOf 4297 records screened, 45 met criteria for inclusion. Meta‐analysis revealed that caregivers reported FCR levels as high as FCR amongst survivors, with around 48% of caregivers reporting clinically significant FCR levels. There was a strong correlation between anxiety and depression and medium correlation with survivor FCR. Twelve different instruments were used to measure caregiver FCR. Assessments using the COSMIN taxonomy revealed few instruments had undergone appropriate development and psychometric testing. Only one instrument met 50% or more of the criteria, indicating substantial development or validation components were missing in most.ConclusionsResults suggest FCR is as often a problem for caregivers as it is for survivors. As in survivors, caregiver FCR is associated with more severe depression and anxiety. Caregiver FCR measurement has predominately relied on survivor conceptualisations and unvalidated measures. More caregiver‐specific research is urgently needed.

A qualitative exploration of fear of cancer recurrence in caregivers

“…Fear of cancer recurrence is also reported as one of the most prominent and enduring unmet needs among informal cancer caregivers 6,7 . Meta‐analytic evidence suggests that 46% of caregivers experience FCR at levels that would be considered clinically significant in patient populations 8 . Three recent systematic reviews further suggest that caregivers experience FCR at levels equal to or higher than those they care for 8–10 .…”

“…Meta‐analytic evidence suggests that 46% of caregivers experience FCR at levels that would be considered clinically significant in patient populations 8 . Three recent systematic reviews further suggest that caregivers experience FCR at levels equal to or higher than those they care for 8–10 . Smith and colleagues 10 proposed that, like distress, 11 there is a bidirectional relationship between patient and caregiver FCR.…”

“…than those they care for. [8][9][10] Smith and colleagues 10 proposed that, like distress, 11 there is a bidirectional relationship between patient and caregiver FCR. Hence, caregiver FCR may reduce both patient and caregiver QoL and exacerbate poorer patient health outcomes by reinforcing patient concerns or compromising the caregiver's ability to provide support.…”

Fear of cancer recurrence in ovarian cancer caregivers: A qualitative study

“…12,13 Current measures of caregiver FCR are also derived from survivor measures and therefore may not reflect caregiver experiences. 15 Previous studies have reported overlap between caregiver and survivor experiences of FCR, however our recent qualitative systematic review indicated that there may be aspects of FCR which are unique to the caregiver experience. 14 Specifically, fear of their loved one dying and the need to adopt a protective role to support their family member, likely characterise the caregiver experience.…”

“…7,10,11 Whilst caregivers (partners, friends and family members providing informal care) report similar or higher levels of FCR when compared to survivors, there remains a paucity of literature related to caregiver FCR. [12][13][14][15] Specifically, how caregivers experience FCR and factors that may contribute to increased levels of FCR are poorly understood. 12,13 Current measures of caregiver FCR are also derived from survivor measures and therefore may not reflect caregiver experiences.…”