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

Abstract

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].

Fear of Cancer Recurrence among Aboriginal and Torres Strait Islander Women Diagnosed with Breast Cancer

“…[ 2 ] Total FCRI scores ( M = 71.0, SD = 29.8) were also slightly higher than other studies of Australian breast cancer survivors (e.g., M = 68.0, SD = 25.6) [ 24 ], similarly suggesting that Aboriginal and Torres Strait Islander breast cancer survivors are more severely affected by FCR. These findings are consistent with a systematic review of FCR in Indigenous and minority peoples, which documented differing FCR levels in majority populations [ 17 ]. Larger studies of Aboriginal and Torres Strait Islander cancer survivors are required to better estimate FCR prevalence and severity.…”

“…This paper responds to the call for further FCR research among Indigenous populations [ 17 ]. One previous qualitative study with Native Hawaiians briefly noted that FCR was common, but this is the first in-depth study focused on FCR in Indigenous cancer survivors, namely Australian Aboriginal and Torres Strait Islander women affected by breast cancer.…”

“…A recent systematic review of FCR among Indigenous, ethnic, and racial minority populations highlighted considerable variability in the prevalence, lived experience, and factors associated with FCR across groups. However, only one study reported on FCR in any Indigenous population, namely Native Hawaiians [ 17 ]. These findings reinforce the need to better understand FCR specifically for Aboriginal and Torres Strait Islander breast cancer survivors, as there may be differences in FCR triggers, presentations, experiences, and potential treatments for this population.…”

Evaluation of the validity and screening performance of a revised single‐item fear of cancer recurrence screening measure (FCR‐1r)

“…While our sample was diverse in terms of gender, cancer type, education level and treatment, greater representation of younger and culturally and linguistically diverse cancer survivors, who may experience and report FCR differently, 37,38 is needed. The relatively low response rate could also have introduced response bias, with the possibility that more stressed patients, who may experience higher FCR were less likely to participate, of particular concern.…”

Fear of Cancer Recurrence or Progression: What Is It and What Can We Do About It?

“…2 Despite this, these latter findings remain limited and should be better explored in future studies, especially with greater inclusion of patients from low-and middle-income countries. For example, Luigjes-Huizer et al 8 have noted that there have been no studies from South America or Africa, and few from low-and middle-income countries, and Anderson et al 21 have highlighted the need to consider cultural factors in this assessment.…”