A Systematic Review of Fear of Cancer Recurrence Among Indigenous and Minority Peoples

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While cancer survivors commonly experience fear and anxiety, a substantial minority experience an enduring and debilitating fear that their cancer will return; a condition commonly referred to as fear of cancer recurrence (FCR). Despite recent advances in this area, little is known about FCR among people from Indigenous or other ethnic and racial minority populations. Given the high prevalence and poor outcomes of cancer among people from these populations, a robust understanding of FCR among people from these groups is critical. The current review identified and aggregated existing literature on FCR amongst adult cancer survivors from Indigenous and minority populations. The protocol of this review was registered with PROSPERO in July 2020 (Registration number: CRD42020161655). A systematic search of bibliographic databases was conducted for relevant articles published from 1997 to November 2019. Data from eligible articles were extracted and appraised for quality by two independent reviewers. Nineteen articles from four countries (United States of America, Canada, Australia and the United Kingdom) met the inclusion criteria, including 14 quantitative, 4 qualitative and 1 mixed-methods study. Only one article reported on an Indigenous population. Few studies reported on FCR prevalence (n = 3) or severity (n = 9). While the variation in tools used to measure FCR hindered a robust estimate of severity, results suggested some differences in FCR severity between minority and dominant populations, although these may have been due to study metholodological differences. Few factors were reported as being associated with FCR in minorities across multiple studies. The qualitative synthesis found five themes associated with the lived experience of FCR: (i) variations in the lived experience of FCR; (ii) spirituality and worldview impacting on FCR; (iii) the importance of staying positive; (iv) complexities around support; and (v) increasing cancer knowledge. The findings of this review highlight differences in FCR across cultures and contexts, which reinforces the need for culturally-specific approaches to this condition. The dearth of research in this area is of concern given the significant burden of cancer in these populations. A deeper understanding of this condition among Indigenous and minority populations is critical to developing and delivering appropriate and effective psychosocial care for cancer survivors from these groups. Systematic Review Registration: identifier [CRD42020161655].

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Background: More than half of cancer survivors experience fear of cancer recurrence (FCR). There has been a call for easily accessible, inexpensive interventions for moderate FCR to complement existing specialized care. In the randomized BLANKET trial, we investigated the effectiveness of a short, primary care intervention for FCR. We report on the potential of the intervention and the suitability of primary care to offer this intervention. Methods: The BLANKET trial is a cluster randomized controlled trial with change in FCR severity (severity subscale of the Fear of Cancer Recurrence Inventory) as its main outcome. Participating general practitioners invited all patients who completed successful curative cancer treatment between 3 months and 10 years ago. We report effect measures, outcome of our recruitment strategy, intervention uptake, reasons not to participate, and experiences with the intervention. Results: Sixty-two of 1368 (4.5%) invited cancer survivors participated. Main reported reasons not to participate were not experiencing FCR and not wanting help. Owing to the low participation, we could not robustly evaluate the intervention's effectiveness. Indicatively, in the intention-to-treat analysis, FCR severity decreased from T0 to T1 by 2.7 points (standard deviation [SD] = 4.7) in the intervention group (n = 27) and 1.8 points (SD = 3.6) in the control group (n = 18). In the per-protocol analysis, the decreases were 3.5 points (SD = 4.5) and 0.7 points (SD = 2.7), respectively. Conclusion: Although the prevalence of FCR and the need for help for FCR are high according to the literature, the uptake of our primary care–based intervention was low. Although the intervention shows potential, alternative delivery routes need to be explored because of the low number of patients who need help for FCR per primary care practice. We recommend additional research on the impact of FCR, on which patients require and desire help, and on what kind of intervention and setting are fitting for what patients.

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