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

OBJECTIVES: 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). METHODS: Four-hundred and thirty-eight caregivers (56% female, Mage = 50.53 years, 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 2 weeks later to assess test-retest reliability. Exploratory factor analysis (EFA) was used to determine factor structure, followed by confirmatory factor analysis. RESULTS: 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). CONCLUSIONS: 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.

Fear of cancer recurrence and mental health: A comprehensive meta-analysis.

OBJECTIVE: This study aimed to examine the relationship between fear of cancer recurrence (FCR) and symptoms of anxiety, depression, and emotional distress in cancer survivors. Additionally, potential effect modifiers of this link were investigated. METHODS: A systematic search was conducted in PsychInfo, PubMed/Medline, Web of Science, and the Cochrane Central Register of Controlled Trials until June 2022. Studies reporting the association between FCR and mental health indices in adolescent and young adult survivors (15-39 years) and adult survivors (>18 years) were included. Study quality was assessed using the Joanna Briggs Institute checklist for cross-sectional studies. RESULTS: A total of 72 primary studies with 31,740 participants were identified, with the majority having a low risk of bias. The results revealed a significant association between FCR and depression, anxiety, and emotional distress. This association was observed whether FCR was examined in relation to each factor individually or collectively. The effect sizes fell within the medium range. Notably, the relationship between FCR and mental health strengthened over the years of publication. Additionally, lengthier FCR assessment instruments yielded larger effect sizes compared to shorter and single-item instruments, underscoring the significance of instrument selection. CONCLUSIONS: This meta-analysis provides further evidence that FCR is linked to a range of common mental health problems. The medium effect sizes observed indicate the need to consider FCR when evaluating the mental health of cancer survivors, and vice versa. Further research is required to elucidate the underlying mechanisms of the FCR-mental health link.

Interconnectivity of fear of progression and generalized anxiety - Network analysis among a sample of hematological cancer survivors.

PURPOSE: Fear of cancer progression and recurrence (FoP) and generalized anxiety disorder (GAD) are syndromes commonly seen in cancer patients. This study applied network analysis to investigate how symptoms of both concepts are interconnected. METHODS: We used cross-sectional data from hematological cancer survivors. A regularized Gaussian graphical model including symptoms of FoP (FoP-Q) and GAD (GAD-7) was estimated. We investigated (i) the overall network structure and (ii) tested on pre-selected items whether both syndromes could be differentiated based on their worry content (cancer related vs. generalized). For this purpose, we applied a metric named bridge expected influence (BEI). Lower values mean that an item is only weakly connected with the items of the other syndrome, which can be an indication of its distinctive characteristic. RESULTS: Out of 2001 eligible hematological cancer survivors, 922 (46%) participated. The mean age was 64 years and 53% were female. The mean partial correlation within each construct (GAD: r = .13; FoP: r = .07) was greater than between both (r = .01). BEI values among items supposed to discriminate between the constructs (e.g., worry about many things within GAD and fear not to endure treatment within FoP) were among the smallest so our assumptions were confirmed. CONCLUSIONS: Our findings based on the network analysis support the hypothesis that FoP and GAD are different concepts within oncology. Our exploratory data needs to be validated in future longitudinal studies.

The prevalence of psychological disorders among cancer patients during the COVID-19 pandemic: A meta-analysis.

PURPOSE: We aimed to assess the prevalence rate (PR) of depression, anxiety, posttraumatic stress disorder (PTSD), insomnia, distress, and fear of cancer progression/recurrence among patients with cancer during the COVID-19 pandemic. METHODS: Studies that reported the PR of six psychological disorders among cancer patients during the COVID-19 pandemic were searched in PubMed, Embase, PsycINFO, and Web of Science databases, from January 2020 up to 31 January 2022. Meta-analysis results were merged using PR and 95% confidence intervals, and heterogeneity among studies was evaluated using I2 and Cochran's Q test. Publication bias was examined using funnel plots and Egger's tests. All data analyses were performed using Stata14.0 software. RESULTS: Forty studies with 27,590 participants were included. Pooled results showed that the PR of clinically significant depression, anxiety, PTSD, distress, insomnia, and fear of cancer progression/recurrence among cancer patients were 32.5%, 31.3%, 28.2%, 53.9%, 23.2%, and 67.4%, respectively. Subgroup analysis revealed that patients with head and neck cancer had the highest PR of clinically significant depression (74.6%) and anxiety (92.3%) symptoms. Stratified analysis revealed that patients with higher education levels had higher levels of clinically significant depression (37.2%). A higher level of clinically significant PTSD was observed in employed patients (47.4%) or female with cancer (27.9%). CONCLUSION: This meta-analysis evaluated the psychological disorders of cancer patients during the COVID-19 outbreak. Therefore, it is necessary to develop psychological interventions to improve the mental health of cancer patients during the pandemic.

The fear of cancer recurrence and progression in patients with pancreatic cancer.

PURPOSE: It is plausible that patients with pancreatic cancer experience fear of tumor recurrence or progression (FOP). The aim of this study was to compare FOP in patients with pancreatic cancer treated with surgical resection, palliative systemic treatment, or best supportive care (BSC) and analyze the association between quality of life (QoL) and FOP and the effect of FOP on overall survival (OS). METHODS: This study included patients diagnosed with pancreatic cancer between 2015 and 2018, who participated in the Dutch Pancreatic Cancer Project (PACAP). The association between QoL and WOPS was assessed with logistic regression analyses. OS was evaluated using Kaplan-Meier curves with the log-rank tests and multivariable Cox proportional hazard analyses adjusted for clinical covariates and QoL. RESULTS: Of 315 included patients, 111 patients underwent surgical resection, 138 received palliative systemic treatment, and 66 received BSC. Patients who underwent surgical resection had significantly lower WOPS scores (i.e., less FOP) at initial diagnosis compared to patients who received palliative systemic treatment or BSC only (P < 0.001). Better QoL was independently associated with the probability of having a low FOP in the BSC (OR 0.95, 95% CI 0.91-0.98) but not in the surgical resection (OR 0.97, 95% CI 0.94-1.01) and palliative systemic treatment groups (OR 0.97, 95% CI 0.94-1.00). The baseline WOPS score was not independently associated with OS in any of the subgroups. CONCLUSION: Given the distress that FOP evokes, FOP should be explicitly addressed by health care providers when guiding pancreatic cancer patients through their treatment trajectory, especially those receiving palliative treatment or BSC.

The psychological impact of COVID-19 among newly diagnosed patients with breast cancer when cancer care was returning to normal.

OBJECTIVE: We aim to evaluate anxiety, depression and fear of cancer progression in newly diagnosed patients with breast cancer when cancer care was returning to normal after COVID-19 by comparing them with the pre-COVID patients and explore the association of worries about further cancer care and loneliness with them. METHODS: Two hundred and eighteen newly diagnosed patients with breast cancer during the pandemic were surveyed using questionnaires, and 153 patients before the pandemic were included in the control group. Logistic regression analyses were used. RESULTS: There were 51.8%, 44.0% and 30.7% of patients during the pandemic reported anxiety symptoms, depressive symptoms and clinically significant fear of cancer progression, respectively. The risks of anxiety symptoms (OR 2.24, 95% CI 1.43-3.51), depressive symptoms (1.61, 1.04-2.50) and clinically significant fear of cancer progression (4.65, 2.49-8.70) were higher in patients during the pandemic than pre-COVID patients. Worries about further cancer care and loneliness were associated with 1.40-2.52 times higher risks of these psychological problems among the patients during the pandemic. CONCLUSIONS: The newly diagnosed patients with breast cancer during COVID-19 are at elevated risks of depression, anxiety and fear of cancer progression, and those who are worried about further cancer care and felt loneliness during the pandemic were more likely to experience psychological problems.

Longitudinal patterns in fear of cancer progression in patients with rare, advanced cancers undergoing comprehensive tumour genomic profiling.

INTRODUCTION: Fear of cancer progression (FCP) impacts quality of life and is a prevalent unmet need in patients diagnosed with advanced cancer, particularly as treatment options are reduced. We aimed to identify longitudinal patterns in FCP over 6 months in patients with advanced cancer receiving comprehensive tumour genomic profiling (CTGP) results, and their correlates. METHODS: Patients with pathologically confirmed metastatic disease (∼70% rare cancers) receiving or post their last line of standard therapy completed questionnaires at T0 (prior to CTGP), T1 (immediately post CTGP results) and T2 (2 months later). RESULTS: High stable (N = 52; 7.3%) and low/moderate stable (N = 56; 7.8%) FCP patterns over time typified the largest participant groups (N = 721). Those with an immediately actionable variant versus a non-actionable variant (p = 0.045), with higher FCP (p < 0.001), and lower Functional Assessment of Chronic Illness Therapy-Spiritual Well-being (FACIT-Sp) scores (p = 0.006) at T0, had higher FCP at T1. Those with higher FCP at T0 (p < 0.001) and at T1 (p < 0.001), lower FACIT-Sp scores at T1 (p = 0.001), lower education (p = 0.031) and female gender (p = 0.027) had higher FCP at T2. DISCUSSION: Routine screening for psychological/spiritual characteristics in those about to undergo CTGP may help to identify patients who may benefit from closer monitoring and provision of psychosocial support. Future studies should explore interventions to best address FCP in this vulnerable group, as interventions assessed to date have almost all addressed patients with curative cancers or newly diagnosed advanced disease.

Fear of disease progression in adult ambulatory patients with brain cancer: prevalence and clinical correlates.

BACKGROUND: Fear of progression (FoP) is frequent in patients with cancer and of high clinical relevance. Despite the often devastating prognosis of brain cancer, FoP has not yet been assessed in neurooncological patients. OBJECTIVE: The aim of this study was thus the assessment of FoP and its clinical correlates. METHODS: In an ambulatory setting, 42 patients with a primary brain tumour completed the Fear of Progression questionnaire FoP-Q-12. Clinical correlates of FoP were assessed via a variety of measures, including patients' physical state (Karnofsky Performance Status, KPS), cancer-related psychosocial distress (Distress Thermometer, DT), anxiety (General Anxiety Disorder Scale, GAD-7), depression (Patient Health Questionnaire, PHQ-9), Quality of Life (Short Form Health Survey, SF-8), and unmet supportive care needs (Supportive Care Needs Survey, SCNS). RESULTS: Eighteen patients (42%) suffered from high FoP (i.e. scored ≥ 34 in the FoP-Q-12). According to the 12 items of the FoP-Q-12, the greatest fears were worrying about what would happen to their family and being afraid of severe medical treatments. No sociodemographic variables (e.g. age, gender) or medical tumour characteristics (e.g. tumour malignancy, first or recurrent tumour) were related to FoP. Patients with more severe physical symptoms reported higher FoP. Patients with higher FoP were more anxious, more depressed, reported lower Quality of Life, and suffered from more unmet supportive care needs. CONCLUSION: Our results demonstrate that FoP is frequent and of high clinical relevance for neurooncological patients. Its assessment is not sufficiently covered by instruments for assessment of other areas of psychological morbidity (e.g. general anxiety). Moreover, FoP cannot be predicted by objective characteristics of the patients and disease. Thus, the routine screening for FoP is recommended in neurooncological patients. Clinicians should bear in mind that patients with high FoP are likely to suffer from high emotional distress and unmet supportive care needs and initiate treatment accordingly.

Which type of fear of cancer progression contributes to the quality of life of Romanian cancer patients during the COVID-19 pandemic?

Introduction: Fear of cancer progression (FoP) is one of the most frequently reported unmet needs invoked by the majority of cancer patients, which may significantly impair the quality of life (QoL) of patients. The major objective of the present cross-sectional study was to investigate the specificities of the relationship between different dimensions and intensity of FoP and different aspects of patients' QoL during the COVID-19 pandemic in Romania. Methods: A nationwide sample of 330 participants completed a survey, including measures of demographic characteristics, medical variables, QoL, and FoP. Multivariate General Linear and Hierarchical Regression Models were conducted in order to assess the relationship between variables. Result: Our results indicate that less than a quarter of the sample experienced low, between 63 and 70% moderate, and 15% high levels of FoP. Our results also indicate that anxiety/worry related to the possibility of progression of the disease, and loss of independence produced significant differences with large effect sizes in all the dimensions of QoL. Discussion: Our results indicate that besides affective reactions, the fear of cancer survivors to lose independence, not being able to attend to their own lives, seems to be a considerable threat, especially in the context of Romanian health system which has difficulties in offering qualitative psychosocial care for cancer patients. The idea that patients will have to rely on others and may not function well independently, not being able to attend to their own lives, seems to be a considerable threat, next to the experienced affective reactions per se.

On top of that all, now Covid-19, too. A scoping review of specificities and correlates of fear of cancer recurrence in breast cancer patients during COVID-19.

Fear of cancer recurrence (FCR) is a normal response in cancer survivors and one of the most prevalent reactions reported by up to 87% of them. However, elevated levels of FCR impair well-being, quality of life and professional functioning, and lead to anxiety, depression or PTSD. COVID-19 pandemic can exacerbate FCR symptoms, given the restricting access to follow-up investigations and treatment, the isolation restrictions imposed and the possibility of the medical system becoming overworked. This scoping review's objective was to synthesize the literature investigating the factors associated with higher levels of FCR in cancer survivors during the COVID-19 pandemic. The focus was on FCR in breast cancer patients, including most of the studies (5 out of 9) on this topic. However, given the novelty of the subject, the increased interest in it, and the fact that there are few studies in this field, the review included 4 other studies with mixed samples of patients with breast cancer and other oncological pathologies. Following rigorous methodological criteria, 9 studies with quantitative or mixed methodology were included (N = 4831 patients). The results indicate that high levels of FCR are associated with distress and concerns regarding the pandemic impact, with most common concerns of patients being changes in treatment plan (delays and interruptions), dysfunctional communication with medical staff or difficult access to food or medicine. The most common correlates of FCR during the pandemic are marital status, childlessness, low financial status, level of education, type of cancer diagnosis, generalized anxiety and depression.

Psychosocial Impact of Cancer Care Disruptions in Women With Breast Cancer During the COVID-19 Pandemic.

Background: The COVID-19 pandemic caused significant disruptions in cancer care, and preliminary research suggests that these disruptions are associated with increased levels of psychosocial distress among cancer survivors. The purpose of this study was to offer a descriptive report of the psychosocial functioning, perceived risk and fear of cancer progression, and COVID-19 pandemic impact and experiences in a unique, high-risk patient cohort: breast cancer survivors whose cancer treatment was delayed and/or changed due to the COVID-19 pandemic. Methods: This cross-sectional study included 50 women with dual carcinoma in situ, lobular carcinoma in situ, or invasive breast cancer whose cancer surgery was postponed due to the pandemic. As they awaited delayed surgery or shortly after they received delayed surgery, participants completed questionnaires on psychosocial functioning (depression, anxiety, sleep, and quality of life), their perceived risk and fear of cancer progression, patient-provider communication about disruptions in their care, personal impact of the pandemic, worry/threat about COVID-19, and COVID-19 symptoms/diagnoses. Descriptive statistics and bivariate correlations were computed among continuous study variables. Independent samples t-tests explored group differences in psychosocial functioning between survivors who were still awaiting delayed surgery and those who had recently received it. Results: Overall, the sample denied that the pandemic seriously negatively impacted their finances or resource access and reported low-to-moderate levels of psychosocial distress and fear about COVID-19. Twenty-six percent had clinically significant levels of fear of cancer progression, with levels comparable to other recent work. About a third were still awaiting delayed cancer surgery and this group reported lower satisfaction with communication from oncology providers but overall did not seem to report more psychosocial difficulties than those who already had surgery. Conclusion: Shortly before or after primary breast cancer surgery that was delayed due to the COVID-19 pandemic, this sample of survivors appears to be generally managing well psychosocially. However, many psychosocial difficulties (e.g., fear of cancer recurrence/progression) typically have an onset after the completion of treatment, therefore, research should continue to follow this cohort of cancer survivors as the pandemic's direct impact on their care likely increases their risk for these difficulties later in survivorship.

Is a Brief Online Booklet Sufficient to Reduce Fear of Cancer Recurrence or Progression in Women With Ovarian Cancer?

Background: Fear of cancer recurrence or progression (FCR/P) is a common challenge experienced by people living with and beyond cancer and is frequently endorsed as the highest unmet psychosocial need amongst survivors. This has prompted many cancer organizations to develop self-help resources for survivors to better manage these fears through psychoeducation, but little is known about whether they help reduce FCR/P. Method: We recruited 62 women with ovarian cancer. Women reported on their medical history and demographic characteristics and completed the Fear of Progression Questionnaire-Short Form (FoP-Q-SF). They then read a booklet on FCR specifically created for Ovarian Cancer Australia by two of the authors (ABS and PB). One week after reading the booklet, 50/62 women (81%) completed the FoP-Q-SF and answered questions about their satisfaction with the booklet. Results: More than half of the women (35/62; 56.5%) scored in the clinical range for FCR/P at baseline. Of the completers, 93% said that they would recommend the booklet to other women. Satisfaction with the booklet was relatively high (75.3/100) and more than two-thirds of women rated it as moderately helpful or better. However, FCR/P did not change significantly over the week following reading the booklet [t (49) = 1.71, p = 0.09]. There was also no difference in change in FCR/P between women in the clinical vs. non-clinical range on the FoP-Q. Women high in FCR/P rated the booklet as less helpful in managing FCR/P (r = -0.316, p = 0.03), but overall satisfaction with the booklet was not associated with degree of FCR/P (r = -0.24, p = 0.10). Conclusions: These results suggest that a simple online FCR booklet is acceptable to women with ovarian cancer and they are satisfied with the booklet, but, it was insufficient to change in FCR/P levels. These results suggest that such resources are valued by women with ovarian cancer, but more potent interventions are necessary to reduce FCR in this population.

"Will It Affect Our Chances of Having Children?" and Feeling "Like a Ticking Bomb" -The Fertility Concerns and Fears of Cancer Progression and Recurrence in Cancer Treatment Decision-Making Among Young Women Diagnosed With Gynaecological or Breast Cancer.

Objective: Cancer treatment decision making process is particularly fraught with challenges for young women because the treatment can affect their reproductive potential. Among many factors affecting the process, fears of cancer progression and recurrence can also be important psychological factors. Our aim is to apply Common-Sense Model and shared decision-making model to explore experiences of treatment decision-making women of reproductive age who were diagnosed with gynaecological or breast cancer and the influence of fertility issues and fears of cancer progression and recurrence. Method: We conducted telephone interviews with 24 women who were diagnosed with gynaecological or breast cancer aged 18-45, who finished active treatment within 5 years prior to study enrolment and had no known evidence of cancer recurrence at the time of participation. They were recruited from three NHS oncology clinics in Scotland and online outlets of cancer charities and support organisations. We analysed the data using Braun and Clarke's thematic analysis method as it allows for both inductive and deductive analyses. Results: We identified five main themes pertaining to treatment-related decision-making experiences and fertility issues and fear of progression and recurrence: Becoming aware of infertility as a potential consequence of cancer treatment; Balancing-prioritising cancer and fertility; Decisions about treatments; Evaluation of treatment decisions; and The consequences of treatments. Sub-themes have also been reported. Different factors such as whether the cancer is breast or gynaecological, physicians' willingness of discussing fertility, influence of others in decision-making, childbearing and relationship status as well as fear of cancer recurrence emerged as important. Conclusion: The importance of physicians directly addressing fertility preservation in the process of treatment decision-making and not treating it as an "add-on" was evident. Satisfaction with treatment decisions depended on both the quality of the process of decision making and its outcome. Fear of recurrence was present in different parts of the adaptation process from illness perceptions to post-treatment evaluation of decisions. Both Common-Sense Model and shared decision-making model were helpful in understanding and explaining young women's experience of treatment decision-making and fertility concerns.

Fear of Cancer Progression: Findings From Case Studies and a Nurse-Led Intervention.

BACKGROUND: Fear of cancer recurrence or progression (FOP) is a significant concern for cancer survivors. With the advent of new targeted therapies and immunotherapy, many patients with advanced cancer are living longer while dealing with uncertainty and fears related to cancer progression. Although some level of FOP is normal and adaptive, high levels adversely affect quality of life and healthcare costs. OBJECTIVES: This article describes a nurse-led intervention for managing FOP in two patients with advanced gynecologic cancer. The intervention teaches skills for managing worry, challenging unhelpful beliefs, and modifying unhelpful coping behaviors. METHODS: Preliminary findings from the two case studies are presented, including a comparison of post-treatment FOP scores to baseline scores. FINDINGS: The participants reported feeling more focused, less overwhelmed, and more in control of their worries. Both participants achieved statistically reliable improvements in FOP scores.

Health literacy and fear of cancer progression in elderly women newly diagnosed with breast cancer--A longitudinal analysis.

OBJECTIVE: This study aims to investigate the distribution of health literacy levels and the association of health literacy with fear of cancer progression (FoP) over the course of cancer treatment in a sample of elderly women newly diagnosed with breast cancer. METHODS: The analyses are part of a prospective, multicenter cohort-study (PIAT) that took place in Germany between 2013 and 2014. Elderly women (aged 65 years and older) newly diagnosed with breast cancer completed validated measures of health literacy and FoP directly after the breast cancer surgery and 40 weeks later. Multivariate random-effects regression analysis for longitudinal data was applied to estimate the association of health literacy with FoP considering socio-demographic, clinical and psychosocial characteristics of the patients. RESULTS: About half of the elderly breast cancer patients in our sample were classified as having limited health literacy (inadequate and problematic levels). Inadequate and problematic health literacy were significantly associated with higher levels of FoP in the elderly breast cancer patients. CONCLUSION: Limited health literacy is an independent risk factor for increased FoP. PRACTICE IMPLICATIONS: Enhancing health literacy could contribute to reducing patients' cancer-related fears.