Fear of cancer recurrence: a theoretical review and its relevance for clinical presentation and management.

To test the hypothesis that patient-initiated follow up reduces the fear of cancer recurrence (FCR) and healthcare use when compared with traditional hospital-based follow up. Pragmatic, multicentre randomised trial. Four Danish departments of gynaecology between May 2013 and May 2016. One hundred and fifty-six women diagnosed with International Federation of Gynecology and Obstetrics (FIGO) stage I low-intermediate risk endometrial carcinoma. Women allocated to the control group attended hospital-based follow up consisting of regular outpatient visits for 3years after primary treatment. Women in the intervention group were instructed in patient-initiated follow up, which included careful instruction in alarm symptoms and options for self-referral rather than a schedule of examinations. The primary end point was FCR as measured by the Fear of Cancer Recurrence Inventory (FCRI) after 10months of follow up. Secondary end points included cancer-related use of primary and secondary health care during the first 10months after treatment. In the primary analysis, FCR decreased significantly more in the control group from baseline to 10months of follow up (difference -5.9, 95% CI -10.9 to -0.9). The majority of this improvement happened after only 3months of follow up. Women receiving the intervention had fewer examinations at the department compared with the control group (0 versus 2 median visits, P<0.01) and 58% of these examinations were scheduled because of vaginal bleeding. Hospital-based follow up alleviates FCR significantly more than patient-initiated follow up, though the estimated difference was small. Patient-initiated follow up is a feasible, potentially cost-reducing follow-up approach in a population of endometrial cancer survivors with low risk of recurrence. The decision to use patient-initiated follow up should balance these benefits and harms. Patient-initiated follow up reduces healthcareuse but maintains fear of recurrence in endometrial cancer. Why and how was the study carried out? Follow up of women with endometrial cancer is resource consuming and previous research suggests that it is not effective. Even though the women benefit from reassurance at follow up, routine examinations may also remind the women of the disease and induce fear of cancer recurrence. Furthermore, routine follow up may delay recurrence diagnosis, because the women do not report their symptoms until the next scheduled visit. In the research explained in this article, patient-initiated follow up was evaluated as an alternative to traditional follow up. The women were randomly assigned to one of two follow-up programmes: regular gynaecological examinations at the department of gynaecology or self-referral with careful instruction in alarm symptoms, that is, patient-initiated follow up. The level of fear of cancer recurrence in the two groups was obtained by questionnaires. Information on healthcare use was obtained by questionnaires and a chart review. What were the main findings? Regular examinations at the department of gynaecology reduced the fear of cancer recurrence significantly more than patient-initiated follow up, though the difference was small. Women who were instructed in alarm symptoms, under self-referral, were able to monitor their symptoms, and this approach significantly reduced the number of examinations at the department of gynaecology. What are the limitations of the work? Participants in the self-referral group knew that they were examined less than other women, and this may have induced fear of cancer recurrence. Similarly, the regular completion of questionnaires regarding fear of cancer recurrence may have reminded the women of the disease and diminished the difference between the two groups. What are the implications for patients Patient-initiated follow up reduced healthcare use but maintained fear of cancer recurrence in women who had survived early-stage endometrial cancer. Future analyses on quality of life and cost-effectiveness are needed to balance the benefits and harms of patient-initiated follow up.

To investigate the trajectory, influencing factors and dynamic relationships between fear of cancer recurrence (FCR) and quality of life (QOL) in lung cancer patients. Prospective longitudinal study. Longitudinal data from 310 lung cancer patients across three hospitals in China were assessed at 1, 3, 6 and 12 months postoperatively (T1 -T4 ). Descriptive statistics characterised patient demographics, clinical characteristics, levels of FCR and QOL. A linear mixed-effects model was employed to analyse FCR trajectories, identify influencing factors on these trajectories, and predict the impact of FCR on QOL. FCR changed significantly over time, with a slight decrease during T1 -T2 , an increase at T3 and gradual decline at T4 . Higher fear levels were associated with female sex, suburban or rural residency, being a family breadwinner, presence of comorbidities and negative coping behaviours, and low family resilience. QOL negatively correlated with FCR, and FCR predicted lower QOL. At 3 and 6 months postoperatively, lung cancer patients, especially women, suburban or rural residents, family breadwinners, those with comorbidities, negative coping behaviours and low family resilience, reported high levels of FCR. Healthcare providers should pay special attention to lung cancer patients especially during the period of 3-6 months post-surgery and offer tailored interventions to improve their QOL. Understanding the FCR trajectories, its influencing factors and its negative impacts on QOL can guide the development of targeted interventions to reduce fear and enhance well-being in patients with cancer. Identifying the trajectories and influencing factors of fear of lung cancer recurrence in patients at different time points informs future research on targeted interventions to improve QOL. The study adhered to the guidelines outlined in the Statement on Reporting Observational Longitudinal Research.

Fear of cancer recurrence is highly prevalent among adult survivors of cancer. The role of fear of recurrence in the emotional distress of survivors of cancer, as well as health behaviors that may directly affect their health, remains unclear. To advance oncology practice, this study sought to examine the extent to which fear of recurrence stemming from physical symptoms accounts for emotional distress in a large sample of adult survivors of cancer and to extend the model to explain postdiagnosis self-reported health behavior change. In 2016, 258 survivors of cancer at an academic hospital completed a survey of psychosocial needs. Items assessed physical symptoms (checklist), fear of cancer recurrence (Assessment of Survivor Concerns), emotional distress (anxiety and depressed mood), and health behaviors (current alcohol use, physical activity, diet, and sunscreen use, as well as changes after cancer diagnosis) informed by National Comprehensive Cancer Network survivorship guidelines. Indirect effects regression models accounting for relevant covariates (age and treatment history) used 5,000-iteration bootstrapping. Higher fear of cancer recurrence was associated with greater number of physical symptoms (P < .001), greater emotional distress (P < .05), lower moderate or vigorous physical activity (P < .05), higher sunscreen use (P < .05), and postdiagnosis increases in alcohol use (P < .01) and reductions in physical activity (P < .01). Fear of cancer recurrence models accounted for almost half of the variance in distress of survivors of cancer (R2 = 0.44, P < .001) and, to a lesser yet significant extent, changes in alcohol consumption (R2 = 0.09, P < .001) and physical activity (R2 = 0.06, P = .003). Fear of cancer recurrence plays a central role in the emotional distress and key health behaviors of survivors of cancer. These findings support fear of cancer recurrence as a potential target for emotional health and health behavior change interventions.

Fear of cancer recurrence, although distinct from distress continues to be under-evaluated, captured, or treated when standard distress scales are used to assess concerns of cancer survivors. We tested a model assessing the association of demographic and clinical factors, illness representations, and perceived risk with fear of cancer recurrence in breast cancer survivors. We recruited 117 breast cancer survivors at least one year after completing breast cancer treatment from Internet discussion boards for this cross-sectional, descriptive, correlational study. Participants completed a survey that assessed their level of fear of cancer recurrence as well as their illness representations, perceived risk of recurrence, and demographic and medical characteristics. Our model explained 62% of the variance in fear of cancer recurrence. Emotional representations (β = .46, p < .01), symptom attribution (β = .21, p < .01), timeline (β = .23, p < .01), and consequences (β = .16, p < .03) were significantly related to fear of recurrence. By contrast, the majority of clinical and demographic variables were not significant contributors to fear of recurrence. Upon completion of cancer treatment, survivors with more emotional representations of the experience and those who attribute unrelated symptoms to their breast cancer have a higher level of fear of recurrence. Evaluation of these factors during treatment may help mitigate fear of recurrence in the survivorship phase of the breast cancer trajectory. Copyright © 2016 John Wiley & Sons, Ltd.

Objective To investigate the effect of resilience on fear of cancer recurrence in breast cancer patients and to find the specific role of perceived social support between them. Methods From April 2018 to January 2019, we invited 456 breast cancer patients hospitalized in the Department of Breast surgery in Qilu Hospital of Shandong University in Jinan to participate in the study and to finish a questionnaire survey which including the general information questionnaire, Chinese version of the Fear of Progression Questionnaire-Short Form, The Connor-Davidson Resilience Scale and Perceived Social Support Scale. Results The average score of fear of cancer recurrence in breast cancer patients was (41.5±7.7), and 85.99% (313/364) of the patients′ score was clinically significant (total score ≥ 34). Resilience could negatively predict the fear of cancer recurrence (β=-0.240 P < 0.01). Perceived social support is the moderation between resilience and fear of cancer recurrence (β=-0.179, P<0.01). Conclusions The level of resilience could affect the level of fear of cancer recurrence in breast cancer patients, and the increase in the level of perceived social support could enhance the effect of resilience on the fear of cancer recurrence, thus further reducing the level of patient′s fear of recurrence. Key words: Breast neoplasm; Resilience; Fear of cancer recurrence; Perceived social support; Moderation

Fear of cancer recurrence and quality of life among gynaecological cancer survivors under treatment

With medical and psychosocial advances in treatment, cancer survivorship has increased, yet fear of cancer recurrence is a main concern negatively affecting the quality of life among cancer survivors. This pilot study examined the relationship between physical activity, locus of control (LOC), and fear of cancer recurrence among participants in a community cancer support program. Self-reported interviews were used to examine if physical activity and LOC have a modifying effect on the negative impact of fear of recurrence among a group of cancer survivors (N = 32). The variables were measured using the fear of cancer recurrence inventory (FCRI), metabolic equivalency tasks (METs), and Rotter’s locus of control questionnaire. The results indicated that higher education levels and higher internal LOC lead to better coping, and thus having a modifying impact on the fear of recurrence. For those undergoing surgery less physical impairment was observed, thereby effecting and lessening the fear of recurrence. Implications for clinical practice and further research are discussed. It becomes important for oncology clinicians and family members to further encourage participation in physical activities among cancer survivors as a means of buffering and lessening the fear of cancer recurrence and thus contributing to better quality of life.

Adjuvant endocrine therapy for early-stage breast cancer has greatly reduced the morbidity and mortality associated with breast cancer recurrence. Despite this, a significant proportion of women report fears of cancer recurrence. This study examined the associations between fear of cancer recurrence (FoR) and illness perceptions, medication beliefs, and treatment side effects in women taking adjuvant endocrine therapy following breast cancer. A total of 153 post-menopausal women with early-stage breast cancer completed a postal survey. Analyses were conducted to examine the association between FoR and illness perceptions, medication beliefs, treatment side effects, demographic factors, and emotional distress and to identify which of these factors would be most strongly associated with FoR in a regression model. All illness perceptions (apart from personal control) were associated with FoR, as were patient beliefs about endocrine therapy. Although treatment side effects, being unemployed, and higher levels of anxiety and depression were associated with FoR, only illness perceptions (identity, treatment control, timeline, and emotional representation) and medication necessity beliefs were significantly correlated with FoR in the final model. It appears that, in addition to directly targeting FoR, it may be worthwhile to address the illness and medication beliefs supporting the fear. Additionally, helping women to differentiate everyday symptoms from those indicative of breast cancer may help to reduce fear of recurrence. What is already known on this subject? A significant proportion of women report fear of cancer recurrence following breast cancer. The literature shows that illness perceptions, side effects of treatment, and beliefs about medicines are related to fear of recurrence among cancer patients. However, because these variables have often been looked at in isolation, it is not clear whether some perceptions or cues are more likely to relate to fear of recurrence than others. What does this study add? This study shows illness perceptions and medication beliefs are strongly related to fears of cancer recurrence. The results point to ways in which the self-regulatory model of illness may be used to reduce patients' fear of recurrence. The study results show that women with higher fear of recurrence may be balancing a tension between believing that they need to take the medication to protect their future health alongside concerns that the treatment may not be working.

Fear of cancer recurrence in Korean women after breast cancer treatment: A mixed methods study.

Fear of cancer recurrence is fear or worry about cancer recurrence or progress. Fear of recurrence can impact patients' quality of life and wellbeing. Cancer survivors' families support them practically and emotionally, making them a vital supplement for official healthcare. Given the well-established important role of the family in dealing with cancer, we compiled the studies that examined the relationship between family-related factors and fear of cancer recurrence (FCR) among cancer survivors (CSs). One of the foremost studies in this field is the FCR model presented by Mellon and colleagues, which included concurrent family stressors and family-caregiver FCR as factors linked to survivor FCR. Our goal was to prepare the ground for a family-based model of FCR that is more comprehensive than the one proposed by Mellon et al. sixteen years ago. The studies included those with samples of adult cancer survivors from different regions of the world. Most of the studies we reviewed are cross-sectional studies. We categorized family-related factors associated with survivor FCR into partner-related factors, including subgroups of disclosure to partner, cognitions of partner, and partner's sources of support; parenthood-related factors, including having children and parenting stress; family-related factors, including living situation, family history of cancer, family's perception of the illness, and family characteristics; and social interactions including social support, disclosure, social constraints, and attitudes of others. This review sheds light on how significant others of cancer survivors can affect and be affected by cancer-related concerns of survivors and emphasizes the necessity of further investigation of family-related factors associated with FCR.

Fear of cancer recurrence (FCR) significantly impacts the treatment and prognosis of lung cancer survivors. However, the mechanisms and factors contributing to FCR and its related consequences in lung cancer remain poorly understood. To evaluate the validity of the Lee-Jones Theoretical Model of FCR in lung cancer survivors. A cross-sectional survey was conducted among 257 lung cancer survivors who had undergone surgical treatment 1 year prior. The participants completed a comprehensive set of questionnaires, and the data were analyzed using structural equation modeling to test the proposed model. The analysis confirmed direct relationships between family resilience, coping behaviors, illness perceptions, FCR triggers, and FCR. Fear of cancer recurrence was also found to have a direct negative impact on quality of life (QOL). Furthermore, levels of family resilience, coping behaviors, illness perceptions, and FCR triggers indirectly influenced QOL through their association with FCR. This study provides partial support for the validity of the Lee-Jones Theoretical Model of FCR in lung cancer survivors. The findings contribute to a better understanding of FCR in this population and lay the groundwork for targeted interventions. Effective strategies to reduce FCR in lung cancer survivors should focus on enhancing family resilience, improving disease cognition, minimizing FCR triggers, and guiding patients toward adopting positive coping styles, ultimately improving their QOL. Fear of cancer recurrence plays a vital role in relationships between internal and external cues and QOL. We can construct interventions to enhance the QOL of survivors based on the FCR influencing factors.

10053 Background: Fear of cancer recurrence (FoCR) following definitive cancer therapy is often reported by patients, but little is known about who is most likely to be impacted, how FoCR influences emotional distress, and what interventions may mitigate patients’ FoCR. We sought to determine the prevalence of FoCR among cancer survivors and to evaluate potential predictors of FoCR in this population. Methods: As part of a comprehensive supportive care needs assessment, we evaluated the prevalence of FoCR among patients receiving follow-up cancer care at our institution as well as factors associated with FoCR. Elevated FoCR was measured with a single item: “I worry about my cancer coming back” rated on a 4-point Likert scale (1 = “not at all” to 4 = ”very much”); responses of 3 or 4 were considered positive for FoCR. Descriptive statistics were used to characterize patterns of FoCR. Chi-square and Fisher’s exact tests compared differences in emotional, clinical, and demographic characteristics between participants with and without FoCR, as well as interest in and knowledge of survivorship services. Results: Of 636 patients who completed the survey, 318/636 (50.0%) patients had curable cancer and had either completed cancer therapy or were completing maintenance treatment. On inquiry, 167/318 (53%) reported FoCR. Those with FoCR were more likely to be female (p &lt; 0.002) and under the age of 70 (p &lt; 0.003). They were also more likely to be sad (25% vs. 14%, p &lt; 0.015), anxious (40% vs. 21% p &lt; 0.0005), feel uncertain about the future (30% vs. 14%, p &lt; 0.0005), have problems managing stress (26% vs. 13%, p &lt; 0.003), and were more likely to worry about dying (55% vs. 8%, p &lt; 0.0001) and to fear another cancer (74% vs. 8% p &lt; 0.0001). Education level, cancer type, knowledge of and interest in support services, and survivorship care plan receipt were not associated with FoCR. Conclusions: Patient FoCR is prevalent among more than half of survivors of cancer and is associated with emotional distress that is insufficiently addressed by survivor care planning and supportive services. Clinicians can and should screen for and address this issue. Future research is needed to develop and test interventions, beyond care plans, to address FoCR in both low risk and high risk patient populations.

PurposeThis study aims to determine the fear of recurrence and the unmet needs among cancer survivors. It also explores the associations between the fear of recurrence, unmet needs and sociodemographic factors.Patients and MethodsThis descriptive study was carried out with 147 cancer survivors. The study was conducted between September 2023 and December 2024 in the training and research hospital. The data were collected using the Participant Assessment Form, the Fear of Cancer Recurrence Inventory (FCRI), the Cancer Survivors’ Unmet Needs (CaSUN-TR) Scale.ResultsThe findings of this study indicates that the median age of the survivors was 56 years. It was found that the fear of recurrence significantly increased with family history of cancer (p=0.001) and total unmet needs were significantly higher among females and those receiving psychological support (p=0.016; p=0.017). The regression analysis was found having a family history of cancer (ß=9.878), and total unmet needs (ß=9.939) and psychosocial support (ß=0.433) predicted the fear of cancer recurrence. Gender (ß=−0.171), psychological support (ß=0.188), and quality of life (ß=0.485) were identified as predictors of the unmet needs of cancer survivors.ConclusionIt was determined that increased unmet needs and a family history of cancer influence on the fear of cancer recurrence in cancer survivors. Therefore, determining the needs of patients receiving cancer treatment and informing patients, particularly those with a family history of cancer, is clinically important.

PurposeApproximately 80% of ovarian cancers recur after first-line treatments. Women with ovarian cancer (OC) are therefore particularly vulnerable to experiencing fear of cancer recurrence (FCR). This study aimed to synthesise experiences of fear of cancer recurrence among women living with ovarian cancer. MethodA qualitative evidence synthesis (QES) was conducted in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. A systematic search of seven databases was undertaken to identify all available qualitative research exploring fear of cancer recurrence in women with OC. Thematic synthesis of extracted data from included studies was undertaken and managed in NVivo. ResultsTwenty-two papers reporting on eighteen studies were included in the synthesis. Three main themes were developed (triggers, responses, and coping) and included ten subthemes. FCR was triggered by factors relating to awareness of prognosis, treatment, and negative communication. Women responded to FCR by performing body checking and protecting their families. FCR led to adverse effects on women's wellbeing as it exacerbated uncertainty about their future. Women attempted to cope with FCR through seeking support, regaining control, and redirecting negative thoughts and actions. ConclusionsWomen use a variety of approaches to manage their fear of recurrence. Further research on the most appropriate interventions for FCR tailored specifically to the needs of women with OC is needed.

The purpose of this study was to identify explanatory factors of fear of recurrence (FOR) in breast cancer survivors of different sexual orientations and their caregivers and to assess the directionality in the survivor and caregiver dyads' FOR. We recruited survivors of non-metastatic breast cancer of different sexual orientations and invited their caregivers into this study. Using a telephone survey, we collected data from 167 survivor and caregiver dyads. Using simultaneous equation models and a stepwise selection process, we identified the significant determinants of survivors' and caregivers' FOR and determined the directionality of survivors' and caregivers' FOR. Weighting the model by the inverse propensity score ensured that differences by sexual orientation in age and proportion of life in the caregiver-survivor relationship were accounted for. Caregivers' FOR predicted survivors' FOR, and sexual orientation had a significant effect on survivors' FOR, in that sexual minority women reported less FOR than heterosexual women. Other determinants of survivors' FOR included their medical characteristics, coresidence with caregivers, and caregivers' social support and use of counseling. Caregivers' FOR was related to their social support and survivors' medical characteristics. This study suggests a need for caregiver interventions. Because survivors' FOR is affected by caregivers' FOR, caregiver interventions will likely benefit survivors' FOR. Both sexual minority and heterosexual breast cancer survivors' FOR are affected by their caregivers' FOR, which suggests that the caregivers of breast cancer survivors are central for the survivors' well-being and shall therefore be integrated into the care process.