An Integrative Review on Factors Contributing to Fear of Cancer Recurrence Among Young Adult Breast Cancer Survivors

Abstract

Background 

Fear of cancer recurrence (FCR) is the most prevalent need among breast cancer survivors. Age is the most consistent predictor of higher FCR, with prevalence rates as high as 70% among young adults. Although the association between age and higher FCR is well established, a more comprehensive understanding of the factors contributing to higher FCR among young adult breast cancer survivors is needed.

Objective 

The purpose of this integrative review was to explore the factors associated with higher FCR among young adult breast cancer survivors (≤ 45 years old).

Methods 

A literature search was conducted using PubMed, CINAHL, PsycINFO, and EMBASE databases with specific Medical Subject Headings terms delimited to FCR, diagnosis, sex, and age range. The initial search yielded 378 studies, 13 of which met the eligibility criteria.

Results 

Themes include motherhood status, health behaviors and decision making (eg, surveillance behaviors and surgical decision making), psychological morbidity, and social support. Cognitive behavioral factors include cognitive processing, metacognition, illness intrusiveness, and self-efficacy.

Conclusion 

Fear of cancer recurrence among young adult breast cancer survivors is a unique construct requiring further exploration and tailored interventions to improve the health-related quality of life for this population.

Implications for Practice 

Oncology nurses should screen all cancer survivors for FCR, with particular attention to the unique needs of young adults. Future research should address the role of age-appropriate support and increased levels of FCR during surveillance periods.

The number of cancer survivors living in the United States is to reach 22.1 million by 2030.¹ Breast cancer is the most commonly diagnosed cancer among women, with roughly 3.8 million breast cancer survivors currently living in the United States.¹ Among women given a diagnosis of breast cancer, approximately 4% are younger than 40 years and 14% are between the ages of 40 and 49 years.² The transition into survivorship is challenging and may include the psychosocial, physical, and financial consequences of a cancer diagnosis.³ Mullan⁴ described 3 periods of survival in his seminal article on cancer survivorship: acute, extended, and permanent. The acute period is characterized by fear and anxiety attributed to the diagnosis of cancer and managing the acute stages of its treatment. Upon treatment completion and the beginning of surveillance or maintenance therapy, patients often feel “lost in transition”³ as they begin the arduous process of establishing a “new normal.”⁵ This period of movement, from a structured healthcare system with frequent examinations to an abrupt cessation of examinations,³ is often dominated by fear of cancer recurrence (FCR).⁴ Fear of cancer recurrence is fear, worry, or concern about cancer either recurring or progressing.⁶ A 2014 systematic review identified FCR as the most prevalent need and top concern among breast cancer survivors.⁷ As the population of cancer survivors continues to grow,¹ it will be essential for oncology nurses to fully understand FCR to best support survivors.

Breast Cancer and Young Age

The diagnosis of breast cancer at a young age is associated with a worse prognosis and lower survival rates^8,9 due to adverse pathological factors, advanced stages at diagnosis,¹⁰ and a higher incidence of human epidermal growth factor 2–positive and triple-negative breast cancer.^9,11 Compared with older women, young women (in 1 study, defined as ≤40 years old) experience greater rates of recurrence and are 52% more likely to die of breast cancer.¹² Despite more aggressive treatments among young women, breast cancer remains the leading cause of cancer-related death among women younger than 40 years.⁹

Although the American Cancer Society defines young adult cancer survivors as those given a diagnosis of cancer between the ages of 20 and 39 years,¹³ the literature on young adult breast cancer survivors includes those given a diagnosis aged 45 years or younger.^14–20 Therefore, the current literature has informed our decision to operationalize young adult breast cancer survivor as women 45 years or younger.

The diagnosis of breast cancer at a young age poses unique psychosocial distress among young survivors. In particular, women believe they are too young to be given a diagnosis of breast cancer and feel upended because of cancer's disruption to developmentally normative milestones.²¹ Common concerns reported by young adult breast cancer survivors center on reproduction and potential family life disruption due to possible recurrence or mortality.²¹ Young women in new or no relationships without established support networks may feel more isolated compared with older women who may have more established support networks.²¹ Greater life demands surrounding family, employment, and children, combined with less experience with illness and the healthcare system, may result in poorer coping skills in the face of a cancer diagnosis.²²

Fear of Cancer Recurrence

The phenomenon of FCR was introduced in the 1970s when the general population associated cancer with death and morbidity, leaving survivors to feel isolated and limited, both personally and professionally.²³ During this time, O'Neill²³ and Cantor²⁴ reported that FCR was nearly universal across both early and late stages of disease.²³ O'Neill²³ first described FCR as a sense of hopelessness and loss of control, all-consuming in the acute phases of illness. After treatment, FCR was referred to as the “Sword of Damocles,” hanging persistently over the patient and their family, and manifesting as a preoccupation of signs and symptoms of disease recurrence.²⁵

In the early 1980s, Northouse²⁶ introduced the first widely accepted definition of FCR and established the first psychometric tool, the Northouse Fear of Recurrence Questionnaire. More recently, FCR has been defined as fear, worry, or concern about cancer either recurring or progressing⁶ and will serve as the operational definition for the purposes of this review. Fear of cancer recurrence lacks an established cutoff or criterion standard measurement to distinguish clinical FCR²⁷ from what may be a normal fear response to the diagnosis of cancer,²⁸ which contributes to a wide range of reported prevalence in the literature, from 39% to 97%.²⁹ However, recent findings from a Delphi study suggest that clinical levels of FCR are characterized by high levels of at least 3 of the following characteristics for at least 3 consecutive months: (1) preoccupation and (2) worry that is (3) persistent, and (4) hypervigilance or hypersensitivity to symptoms or sensations indicative of cancer recurrence.³⁰ These characteristics of clinical FCR are not validated and therefore do not allow practitioners to provide formal diagnoses; however, they can be used to improve identification of individuals experiencing clinical levels of FCR and thus appropriately intervene.³⁰

Higher FCR has been associated with greater anxiety, depression,²⁹ poorer quality of life,^27,29,31 and greater psychological distress and physical symptom burden.²⁹ Implications of FCR may include the development of dysfunctional behaviors and, in extreme cases, mental health disorders²⁸ and functional impairment.²⁹ To date, most interventions proposed to manage FCR use mindfulness-based stress reduction or cognitive behavioral therapy.³² These interventions have demonstrated acceptability and feasibility and have the potential to manage FCR.^32,33

Approximately 50% of breast cancer survivors experienced moderate to severe FCR,³⁴ with rates up to 70% among young adults.¹⁷ The association between young age and high FCR is well established,^7,27–29,31 and age is the most consistent predictor of FCR among breast cancer survivors.²⁸ However, little is known regarding why young adult cancer survivors experience higher FCR.²⁹ It is suggested that the association is related to cancer's threat to developmentally normative milestones (eg, marriage, career, children) and the perception of being “too young” to be given a diagnosis of cancer.²⁹

Purpose Statement

Consistent with the National Academy of Medicine's goal of addressing the medical, functional, and psychosocial outcomes during the survivorship period,³ the purpose of this integrative review was to gain a more comprehensive understanding of the factors associated with higher FCR among young adult (≤45 years old) breast cancer survivors. A better understanding of these factors will help guide the development of screening measures, identify modifiable triggers, and further develop tailored interventions to address FCR and, ultimately, improve the health-related quality of life for this uniquely vulnerable population of young adult breast cancer survivors.

Theoretical Framework

Lazarus and Folkman's³⁵ Transactional Stress and Coping Theory served as the theoretical framework for this integrative review. The framework supports that psychological stress occurs when an external stimulus (eg, cancer) poses a threat that exceeds a person's resources. Coping behaviors are determined by an individual's appraisal of the threat and are either emotion or problem focused. Emotion-focused coping alters the individual's perception or meaning of the threat, whereas problem-focused coping manages the threat.³⁶ Among cancer survivors, external stimuli capable of posing a threat include perceived risk of recurrence, signs and symptoms of disease, surveillance behaviors (eg, avoidance of mammography), and other triggers (eg, knowing someone given a diagnosis of cancer or losing a family member or friend to cancer).

Literature Search

For the purposes of this review, the guidelines of Whittemore and Knafl³⁷ were followed to ensure reader transparency and reproducibility of the literature search. A thorough literature search was conducted in February 2019 using the databases PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), PsycINFO, and EMBASE, and using the following Medical Subject Headings terms: “fear of cancer recurrence,” “fear of recurrence,” “FCR” OR “cancer worry” AND “young adult,” “AYA,” “young” AND “breast cancer,” “breast cancer survivor.” Ancestry and descendancy searching were used, as well as a hand search of literature written by experts in the field of psycho-oncology. Two authors (the first 2) independently conducted the literature search and used Covidence to develop a master database for this process. Covidence is a systematic review management software that allowed for multiple authors to screen articles at the same time. Duplicate articles were removed, and the 2 authors independently screened titles, abstracts, and full texts until agreement regarding the final articles to include was reached.

Inclusion and Exclusion Criteria

The authors included peer-reviewed quantitative, qualitative, and mixed-methods primary studies written in the English language that explored FCR among young adult female breast cancer survivors 45 years or younger. Several articles were excluded based on the population not being exclusive to young adults. If articles did not assess FCR directly or looked explicitly at pregnancy and FCR, they were also removed. Quantitative studies were excluded if they did not use an established psychometric tool to measure FCR. Unpublished manuscripts including dissertations and abstracts were excluded as per Whittemore and Knafl³⁷ guidelines.

The search criteria were limited to 2003 to 2019 because breast cancer rates have been stable since 2003, likely because of the decrease in hormonal therapy during menopause.³⁸ Search criteria were limited to Western countries with similar incidence and mortality rates.³⁹ The removal of date and geographical restrictions identified no further articles.

Search Results

The initial search yielded 378 studies. After removing duplicates, the titles and abstracts of 335 studies were reviewed, with 56 full-text articles reviewed for eligibility (see Figure).

Figure: Preferred Reporting Items of Systematic Reviews and Meta-analysis (PRISMA) flow chart.

Data Evaluation

All studies were critically appraised according to Whittemore and Knafl³⁷ guidelines. Quantitative studies were appraised using the Strengthening the Reporting of Observational Studies in Epidemiology checklist. Qualitative studies were appraised with the Critical Appraisal Skills Program checklist. Studies that did not meet the criteria set forth in Strengthening the Reporting of Observational Studies in Epidemiology and Critical Appraisal Skills Program were eliminated.

Data Analysis

Through an iterative process, the following categories were extracted and presented in Table 1: study design, purpose, theoretical framework, sample size, inclusion and exclusion criteria, study variables, major findings, and strengths and limitations. Table 2 displays factors associated with FCR by main, interaction, and mediation effects. Conclusion drawing and verification involved a higher level of abstraction to identify commonalities and differences, which were continually revised and verified with primary source data.

Table 1 - Summary of Reviewed Studies

	Design and Purpose	Sample Size, Inclusion and Exclusion	Measurement	Main Findings	Strengths and Weaknesses
Arès et al,14 2014	Design: Cross-sectional Purpose: • Aim 1: Explore the effect of motherhood status on well-being in young adult breast cancer survivors (perceived stress, illness intrusiveness, and FCR) during short-term (0–5 y) and long-term (5–15 y) periods of survivorship • Aim 2: Explore whether potential determinants (mother's age, children's age, time since diagnosis, parenting stress) influence the well-being (perceived stress, illness intrusiveness, and FCR) of young mothers with a history of breast cancer Theoretical framework: Transactional model of stress	Sample: • Aim 1, n = 742 • Aim 2, n = 531 (subsample of young mothers) • Convenience (online recruitment) Inclusion: 18–45 years old at diagnosis, diagnosed within the past 15 y Exclusion: advanced disease (stage IV), cancer recurrence, history of other cancer, chemotherapy or radiation (other than for breast cancer), psychiatric, neurologic, or substance use disorders	FCR: • CARS  ○ Overall fear subscale (4 items): addresses frequency, consistency and intensity, and potential degree of upset as a result of fear Other: • IIRS • PSS • Parenting Stress Scale (mothers only)	Aim 1 • Young breast cancer survivors with children reported significantly higher FCR (mean [SD], 3.57 [1.38]) and illness intrusiveness (intimate life domain) during both periods (0–5 and 5–15 y) in comparison with young breast cancer survivors without children (mean [SD], 3.27 [1.32])  • No interaction effect between motherhood status and period (0–5 and 5–15 y) • Young breast cancer survivors given a diagnosis in the last 0–5 y reported worse overall well-being, including FCR (F 1,738 = 69.91, P < .001, partial n2 = 0.087) compared with survivors 5–15 y post diagnosis, regardless of their motherhood status. Aim 2 Independent determinants of FCR in young mothers: • Parenting stress (β = 0.18, t 515 = 3.25, P = .001) • Younger age (β = −0.23, t 515 = −2.71, P = .007) Combined main effects: • Combined main effects of 4 determinants (mother's age, children's age, time since diagnosis, parenting stress) accounted for 13% of the variance in FCR (F change(4,526) = 18.83, P < .001)	Strengths: • Conceptual model identified • Online recruitment able to capture a larger sample • Justification for using 45 y as cutoff age for “young survivors” • Outcome measures clearly defined • Controlled for covariates Weaknesses: • Clinical cutoff points for each scale (eg, CARS for FCR) not indicated • CARS overall fear subscale only • No sensitivity analysis • Missing data not addressed • No power analysis • Lack of racial and ethnic diversity in sample • Covariates accounted for but findings related to FCR unclear
Champion et al,15 2014	Design: Cross-sectional Purpose: • Examine the effect of breast cancer and age on 5 domains of quality of life: physical, psychological, social, spiritual, and overall • Compare quality of life measures between (a) YSs (≤45 years old) and ACs and (b) YSs and OSs (55–70 years old) Theoretical framework: 5 domains of quality of life identified by Ferrell et al (1997): physical, psychological, social, spiritual, and overall	Sample: • N = 1531 • n = 505 YSs • n = 622 OSs • n = 404 (ACs to YSs) • Convenience (ECOG) Inclusion: treated at ECOG site, ≤45 or 55–70 years old at diagnosis, 3–8 y from diagnosis, no recurrence, treated with chemotherapy (adriamycin, paclitaxel, and cyclophosphamide) Exclusion: none reported	FCR: • CARS Other: • SF-36, FACT-F, PSQI, Attention Function Index, CES-D, STAI, body image (investigator developed), PTGI, IES-R, IWB, SPS • Measures requiring partners: Northouse Social Support Scale, Lepore Social Constraint Scale, Marital Satisfaction Scale (ENRICH MSS), sexual function (sexual enjoyment and functioning)	• YSs reported higher levels of FCR (F = 82.56, P < .0001) compared with OSs (adjusted mean, 39.21 in YSs and 22.76 in OSs). • YSs report greater fatigue (P < .0001), poorer attention function (measure of perceived cognitive function) (P < .0001), and worse sexual function (P < .0001) compared with OSs. • YSs reported more anxiety (P < .0001) and depressive symptoms (P < .001) compared with OSs.  • 27% of YSs met criteria for possible clinical depression, compared with 17% of ACs. • YSs reported greater social constraint (P = .0086), poorer social support (P = .0003), and lower spirituality (P < .001) compared with OSs.	Strengths: • Controlled for demographics and treatment variables as potential confounders • Reported results comparing YSs with OSs and ACs • 10-y gap between young and old survivors to account for overlap Weaknesses: • Did not identify study period • Psychometrics lacking report of clinically significant cutoffs • No prevalence of FCR reported; only comparison of means
Cohee et al,16 2017	Design: Cross-sectional (part of parent study) Purpose: • Examine the role of the Social Cognitive Processing Theory (SCPT) in predicting FCR in breast cancer survivors and their partners • Determine whether cognitive processing (defined as intrusive thoughts and cognitive avoidance) is a mediator of social constraints and FCR in both young adult breast cancer survivors and their partners Theoretical framework: SCPT	Sample: • N = 444 • n = 222 YSs • n = 222 partners • Convenience (ECOG) Inclusion: ≤45 years old at diagnosis, 3–8 y post diagnosis, no recurrence, stages I-IIIa, treated with a combination of adriamycin, paclitaxel, and/or cyclophosphamide Exclusion: None reported	FCR: • CARS Other: • Social constraints: Lepore Social Constraints Scale • Cognitive Processing: Impact of Event Scale:  • Intrusive thoughts subscale  • Cognitive avoidance subscale	• Age was the only significant variable associated with FCR (r = −0.239, P = .01) • 80.7% of breast cancer survivors and 78.8% of partners reported social constraints. • Breast cancer survivors with greater social constraints reported higher cognitive processing scores (path a = 0.672) and more FCR (path b = 0.310) compared with those who reported fewer social constraints • Social constraints and FCR are mediated by cognitive processing for both breast cancer survivors and their partners • 52.3% of breast cancer survivors and 53.6% of partners reported moderate to high FCR on the CARS (r = 0.196, P < .05). • Time since diagnosis, education, religion, race/ethnicity, income, and comorbidities not significantly associated with FCR (P < .25)	Strengths: • Results suggest interventions should target partners and breast cancer survivors. • Sensitivity analysis on CARS subscales • Proposed implications for interventions using SCPT Weaknesses: Lack of racial and ethnic diversity in sample • Study period not identified • No power analysis • P value of association between demographic variables and FCR not reported; however, authors reported age was the only significant demographic (P < .25)
Connell et al,40 2006	Design: Qualitative: longitudinal (3 phases) Purpose: • Explore the issues and concerns among young Australian women with breast cancer • Explore greatest unmet needs, greatest general concern (ie, opinions), and major personal concern (ie, experiences) Theoretical framework: None identified	Sample: • N = 35 • Convenience Inclusion: ≤40 years old at diagnosis, English speaking, diagnosis within 4 y Exclusion: palliative care	• In-depth, semistructured interviews • Audiotaped and transcribed	• Greatest personal concern: FCR and future uncertainty (54%) • Greatest unmet need: emotional and physical support as most common (37%). Among women 25–36 mo since the time of diagnosis, support was the only unmet need. • Greatest general concern: consumer-related needs and family-related concerns; 51.5% reported that support services were inadequate for young women; 28.5% reported support not age appropriate • Major personal concern: children and family • Mortality concerns consistent across time since diagnosis • Women wanted emotional support from other young breast cancer survivors • Source of fears related to missed opportunities to participate in children's upbringing and potential burden on partners or family members • Recommendations include providing age-appropriate support for young breast cancer survivors. • FCR major personal concern in almost twice as many participants who received lumpectomy compared with mastectomy	Strengths: • Literature-based themes guided data reduction • Data saturation discussed Weaknesses: • Only 1 phase of 3 completed • Unclear presentation of the most common concerns reported
Lebel et al,41 2013	Design: Cross-sectional Purpose: • Compare the prevalence of FCR in 4 age groups: <34, 35–49, 50–64, and >65 y • Explore impact of motherhood status and age of children on severity of FCR • Explore whether cancer severity, state anxiety, illness intrusiveness, and motherhood status mediate the relationship between age and FCR Theoretical framework: Lee-Jones adaptation of the Leventhal's Self-Regulation Model of Illness	Sample: • N = 3239 • Convenience Total N = 3239 Inclusion: previous treatment of breast cancer, ≥18 years old Exclusion: stage 4 disease, unstable psychiatric, neurological, or substance use disorder. History of chemotherapy or radiation for cancer other than breast	FCR: • CARS Other: • STAI, Illness Intrusiveness Scale, relationship and personal development subscale, intimacy subscale, instrumental subscale	MANOVA • Age group associated with FCR (F = 10.37, P < .001). Younger women (<34 and 35–49 y), regardless of motherhood status, are more likely to report higher FCR compared with older women. • Women aged <34 y reported more overall fear than all age categories. Women aged 35–49 y reported more overall fear than those aged 50–64 and >65 y. • Women with children had higher FCR than women without children (F = 6.64, P < .001) regardless of mother or children's age. Mediation analysis CARS: Overall FCR • Illness intrusiveness and state anxiety mediate the effect of age on overall FCR (P < .001). Overall: Results suggest that illness intrusiveness and state anxiety, to a lesser degree, mediate the association between age and FCR. Cancer severity is a nonsignificant mediator.	Strengths: • Heterogeneity in the definition of YSs acknowledged • Mediation analysis with bootstrapping, multiple comparisons with Bonferroni Weaknesses: • No exclusion criteria for time since diagnosis (mean range, 2.87–10.58)
Rees,42 2017	Design: Qualitative Purpose: • Explore the perceptions of young women given a diagnosis of breast cancer, with a focus on describing the concept of liminality Theoretical framework: Interpretive paradigm	Sample: • N = 20 • Convenience Inclusion: previous treatment of breast cancer, 18–44 years old, diagnosed 12 mo to 10 y; treatment in the United Kingdom and not in current treatment of other cancer	• In-depth, semistructured interviews • Audiotaped and transcribed • Grounded theory	Major themes: • Uncertainty: uncertain about recurrence, fertility status, and the burden of living with uncertainty at a young age. • Liminality: women described a liminal state in which they were between multiple positions (fertility, menopausal status, and disease status). • Liminality influenced their sense of agency over their life course. • Redefining a new normal: young women felt limited in their ability to discuss their experience because of the expectations of being back to normal.	Strengths: • New themes emerged surrounding the concept of liminality and redefining a new normal. • breakdown of participants' demographics Weaknesses: • Data saturation not discussed
Rees,43 2018	Design: Qualitative Purpose: • Explore how FCR can be conceptualized as an embodied experience among young adults with breast cancer	Sample: • N = 20 • Convenience Inclusion: previous treatment of breast cancer, 18–44 years old, diagnosed 12 mo to 10 y; treatment in the United Kingdom and not in current treatment for other cancer	• In-depth, semistructured interviews • Audiotaped and transcribed • Grounded theory	Major themes: • Living with FCR was a significant theme among young women. • Risk of recurrence was conceptualized as an embodied risk, which changed how they experienced and understood their bodies. • Perceived their risk of recurrence as inherent within their bodies; their bodies inferred a sense of danger and anxiety; mistrust in their ability to determine whether they are healthy. • Women relied on medicine to determine their health status but also understood that medicine is limited in its ability to declare they are cancer free.	Strengths: • Inclusion of direct quotes supports study findings. Weaknesses: • Does not address limitations. • Data saturation not discussed.
Rosenberg et al,44 2015	Design: Cross-sectional (part of parent prospective cohort) Purpose: Identify the factors associated with the decision to undergo CPM versus UM and CPM versus BCS	Sample: • N = 560 • Convenience Inclusion: diagnosis at ≤40 years old, stage I-III unilateral breast cancer, and English speaking	FCR: • 1 item from the Lasry Fear of Recurrence Scale Other • Medical and surgical characteristics • Genetic testing status and family history • HADS; Control Preferences Scale (surgical decision involvement); single item measuring confidence with decision	• Psychosocial factors predictive of CPM include anxiety, less FCR, and patient-driven decision. • Women with low/moderate FCR were more likely to have CPM rather than BCS (OR, 0.49; 95% CI, 0.28–0.86; P < .05) or UM (OR, 0.56; 95% CI, 0.32–0.98; P < .05) • Frequently cited reasons to select CPM include “peace of mind” and risk of recurrence. • Higher generalized anxiety associated with CPM • Women confident with surgical decision were almost twice as likely to have a CPM than BCS.	Strengths: • Cutoff scores for psychological factors provided • Confounding variables addressed (eg, extent of disease, BRCA carrier status [11%]) Weaknesses: • FCR measured with a single item from the Lasry Fear of Cancer Recurrence Scale; responses dichotomized (very much to high degree of worry, moderately, a little, not at all to low degree of worry) • Lack of racial/ethnic diversity in sample • Surgical decision surveys collected post surgery • No power analysis
Thewes et al,17 2012	Study: Cross-sectional Purpose: • Explore the prevalence and associations of FCR among young female breast cancer survivors • Explore the association between FCR and medical surveillance and healthcare use/behaviors in young women with breast cancer Theoretical framework: None identified	Sample: • N = 218 • Convenience • 7 metropolitan oncology clinics and 2 consumer groups in Australia Inclusion: 18–45 years old at diagnosis, diagnosis 12 mo to 10 y ago, completed treatment, stages 0–2, no history of recurrence or new primary cancer Exclusion: Unable to consent, did not speak English	FCR: • FCRI Other: • Frequency of healthcare provider visits, breast self-examination frequency and compliance, other surveillance behaviors (frequency of mammograms/ultrasounds), complementary and alternative medicine use, other healthcare use (support groups, counseling, membership of advocacy groups)	• FCR is prevalent (70%) and associated with a higher cost of healthcare, lower medical surveillance (eg, mammograms), and more frequent self-administered surveillance • Among women reporting clinical range of FCR: • 25% reported FCR impacted mood “a lot” or “great deal” • 19% reported FCR affected ability to make future plans • Significant association between age and FCR unadjusted slope (−1.3; 95% CI, −2.0 to −6.9; P < .0001) • Women reporting more unscheduled visits to healthcare providers scored 9.9 points higher on FCR measure (adjusted estimate, 9.9; 95% CI, 2.3–17.4; P = .01) • Women reporting more frequent breast self-examinations scored 11.4 points higher on FCR measure compared with women who followed recommendations (adjusted estimate, 11.4; 95% CI, 2.9–20.0; P = .02) • Women with mammogram or ultrasound in the past 12 mo scored 18.2 points lower on FCR measure (adjusted estimate, −18.2; 95% CI, −29.1 to −7.3; P = .001)	Strengths: • Cutoff scores for FCR screening measure reported • 92% completion rate • Findings compared with a sample of cancer patients with mixed diagnoses (N = 600) • ASCO guidelines followed when comparing frequency of unscheduled visits, mammograms or ultrasounds, and breast self-examinations • Controlled for confounders: age at diagnosis, cancer stage, time since diagnosis, motherhood status, education Weaknesses: • Study period not identified • FCR recurrence tool meant to be used as a screening tool • Report that potential confounders were not significant in models but do not provide P value (stage, time since diagnosis, education, children)
Thewes et al,18 2013	Design: Cross-sectional Purpose: • Determine whether maladaptive cognition is associated with higher FCR Theoretical framework: Self-Regulatory Executive Function model	Sample: • N = 218 • Convenience, part of parent study Inclusion: 18–45 years old at diagnosis, diagnosis 12 mo to 10 y ago, completed treatment, stages 0–2, no history of recurrence or new primary cancer	FCR: • FCRI Other: • MCQ-30: total score and 5 subscales	• FCR scores significantly higher than a different sample of 600 patients with mixed cancer diagnoses (95% CI, 12.1–20.9; P < .0001) • All metacognitive styles (MCQ-30 scores) showed moderate correlation with FCR (r = 0.31–0.49, P < .0001) and explained 36% of variability in FCR scores • R 2 increase of 0.26 after accounting for demographic/medical variables • MCQ-30 metacognitive subscales with the highest R 2: negative metacognitions and need for control over cognition were correlated with higher FCR scores • Age (P = .01) and time since diagnosis (P = .004) negatively associated with FCR. Stage of disease not significantly associated with FCR. • Young breast cancer survivors with a maladaptive metacognitive style reported higher FCR.	Strengths: • Reliability and validity of psychometrics discussed • FCR scores compared with a sample of cancer patients with mixed diagnoses • Unadjusted and adjusted models Weaknesses: • FCR recurrence tool meant to be used as a screening tool • No power analysis • Self-report clinical data (1/5 of participants did not recall cancer stage)
Thewes et al,19 2013	Design: Cross-sectional Purpose: • Examine the association between FCR and psychological (eg, generalized anxiety, hypochondriasis, depression) and social (eg, perceived social support) variables • Examine comorbidity between generalized anxiety disorder and hypochondriasis with clinical levels of FCR Theoretical framework: None identified	Sample: • N = 218 • Convenience Inclusion: 18–45 years old at diagnosis, diagnosis 12 mo to 10 y ago, completed treatment, stages 0–2, no history of recurrence or new primary cancer	FCR: • FCRI Other: • Psychological function: Depression Anxiety Stress Scale-Short Form; GAD questionnaire (4th ed.); Whitely Index-Short; 1-item perceived social support • 2-item stressful life events or major changes; childbearing attitudes; past cancer-related experiences	• 43% of participants with clinical levels of FCR also met criteria for a probable case of generalized anxiety disorder and 36% for hypochondriasis • Psychological morbidity (health anxiety, generalized anxiety, and psychological functioning) associated with FCR • Social variables, including motherhood status, perceived social support, childrearing attitudes, and previous cancer-related experiences were not associated with FCR in adjusted and unadjusted regression model. • Time since diagnosis and age at diagnosis were significantly associated with FCR in adjusted and unadjusted models. Number of stressful life events associated with FCR in unadjusted model only.	Strengths: • FCR clinical levels clearly defined, and cutoff scores included • Findings compared with a sample of cancer patients with mixed diagnoses • Potential confounders addressed Weaknesses: • No power or sensitivity analyses reported
Wan et al,45 2018	Design: Cross-sectional Purpose: • Compare well-being (HRQOL, FCR, illness intrusiveness, perceived stress, social support) between young breast cancer survivors with and without children Theoretical framework: None identified	Sample: • N = 816 • Convenience Inclusion: 18–44 years old Exclusion: stage 4 disease, cancer recurrence, other cancer history, or chemo/radiation	FCR: • CARS Other: • MOS-SF-36, PSS, IIRS, SSQ	• Young breast cancer survivors with children experience a co-occurrence of psychological distress, illness intrusiveness, and FCR more often than breast cancer survivors without children. • Factors contributing to the well-being of young adult breast cancer survivors: recurrence worries, physical health, psychological adjustment, illness intrusiveness	Strengths: • Compare the well-being between young adult breast cancer survivors with and without children • Large sample size Weaknesses: • No power or sensitivity analyses reported
Ziner et al,20 2012	Design: Cross-sectional Purpose: • Explore the association between age and FCR • Examine the predictors of FCR with self-efficacy as a mediator Theoretical framework: theories of “emotion “and “self-efficacy”	Sample: • N = 1128 Inclusion: 18–45 y (younger group) or 55–70 y (older group) at cancer diagnosis, received chemotherapy, 3–8 y since diagnosis	FCR: • CARS Other: • Knowledge of Recurrence signs • Ridner's Symptom Bother Scale (eg, signs of lymphedema) • Trait Anxiety Inventory • Breast Cancer Survivor Self-Efficacy Scale • Perceived risk of breast cancer recurrence (1 item) • Knowledge of someone with a breast cancer recurrence (yes/no) • Breast Cancer Reminders Scale	• Younger age significantly associated with higher FCR. Among subscales, greatest difference in parenting worries subscale. • Antecedents of FCR: age at diagnosis, perceived breast cancer recurrence risk, trait anxiety, and reminders of breast cancer all negatively associated with FCR (P = .001)  • Knowing someone with breast cancer recurrence, symptom bother. and knowledge of recurrence signs not associated with FCR. • Antecedents explained 38% of variance in FCR • Symptom bother, trait anxiety, reminders and perceived risk of breast cancer recurrence, and knowing someone with a recurrence all negatively associated with breast cancer self-efficacy (P < .05). • Self-efficacy explained 18% of variance in FCR (P < .001). • Self-efficacy partially mediates the association between FCR and age at diagnosis, perceived risk of breast cancer recurrence, trait anxiety, and reminders of breast cancer. • Greater self-efficacy is predictive of lower FCR.	Strengths: • Setting time since diagnosis inclusion criteria to 3–8 y controls for any bias that could be introduced by perception that 5 y post diagnosis infers greater survival • 10-y gap between younger and older groups • Measures assessed for content validity by 8 experts • Face validity confirmed by breast cancer survivors Weaknesses: • No specific theoretical framework • Sample not racially and ethnically diverse • When testing symptom bother, signs were related to treatment complications, not breast cancer specifically • Confidence intervals and power analysis not reported • Symptoms assessed were related to complications of lymphedema rather than signs of breast cancer

Abbreviations: ACs, age-matched controls; ASCO, American Society of Clinical Oncology; BCS, breast-conserving surgery; BRCA, breast cancer susceptibility gene; CARS, Concerns About Recurrence Scale; CES-D, Center for Epidemiologic Studies Depression Scale; CI, confidence interval; CPM, contralateral prophylactic mastectomy; ECOG, Eastern Cooperative Oncology Group; FACT-F, Functional Assessment of Cancer Therapy fatigue subscale; FCR, fear of cancer recurrence; FCRI, Fear of Cancer Recurrence Inventory; GAD, generalized anxiety disorder; HADS, Hospital Anxiety and Depression Scale; HER-2, human epidermal growth factor receptor-2; HRQOL, Health related queality of life; IES-R, Impact of Even Scale-Revised; IIRS, Illness Intrusiveness Ratings Scale; IWB, Index of Well-Being; MANOVA, multivariate analysis of variance; MCQ-30, Metacognitions Questionnaire-30; MOS-SF-36, Medical Outcomes Study-Short Form; OR, odds ratio; OS, older survivors; PSS, Perceived Stress Scale; PSQI, Pittsburgh Sleep Quality Index; PTGI, Post-Traumatic Growth Inventory; SF-36, Short Form Health Survey; SPS, Reed Spiritual Perspective Scale; SSQ, Social Support Questionnaire; STAI, State-Trait Anxiety Inventory; UM, unilateral mastectomy; YS, younger survivors.

Table 2 - Factors Associated With FCR Across Studies

Factors Associated With FCR	Ares et al., 2014	Champion et al. 2014	Cohee et al., 2015	Lebel et al., 2013	Rosenberg et al., 2015	Thewes et al, 2012	Thewes et al., 2013a	Thewes et al., 2013b	Ziner et al., 2012
Main effects
Age	↑↓a	↑↓a	↑↓a	↑↓a		↑↓b	↑↓b	↑↓a	↑↓a
Time since diagnosis	↑↓a		c			c	↑↓a	↑↓a
Motherhood	↑↑b			↑↑a		c		c
Age of children	c			c
Parenting stress	↑↑a
Cancer stage						c	c	c
Education			c			c	c	c
Religion			c
Race/ethnicity			c
Income			c
Self-efficacy									↑↓a
Social constraints (indirect effect)			a
Breast cancer reminders									↑↑a
Trait anxiety									↑↑a
Unscheduled visits to GP						↑↑a
Frequent breast self-examinations (more often) (unadjusted)						↑↑b
Mammogram or ultrasound in past year (one or more)						↓↑a
Maladaptive metacognition							↑↑a
Psychological morbidity								↑↑
Perceived risk of recurrence									↑↑a
Perceived social support								c
Desire for future children								c
No. stressful life events and degree of stress caused by stressful life events								c
Previous cancer experience in friend/relative, recurrence in friend or relative								c	c
Knowledge of recurrence signs									c
Symptom bother									c
Contralateral prophylactic mastectomy					↑↓b
Interaction
Time Since Diagnosis × Motherhood Status	c
Mother's Age × Age of Children	c
Mother's Age × Time Since Diagnosis	c
Motherhood Status × Age				c
Age of Youngest Child × Age of Mother				c
Mediation
Cognitive processing mediator of social constraints and FCR			b
Illness intrusiveness mediator of age and FCR				a
Anxiety mediator of age and FCR				a
Cancer stage mediator of age and FCR				c
Total nos. factors	8	1	8	8	1	8	5	10	8
Total no. significant factors	4	1	3	4	1	4	3	3	5

Abbreviations: FCR, fear of cancer recurrence; GP, general practitioner.

↑↓ indicates inverse association (main effects only), whereas ↑↑ indicates positive association (main effects only).

^a Significant factor, P < .001.

^b Significant factor, P < .05.

^c Nonsignificant association.

Presentation of Results

OVERVIEW

Thirteen articles were included in this integrative review: 10 cross-sectional and 3 qualitative (see Table 1). Fear of cancer recurrence was a primary outcome in all but 1 quantitative study,⁴⁴ which identified factors, such as FCR, associated with surgical decision making. Three tools were used to measure FCR: Concerns About Recurrence Scale (CARS) (n = 6), Fear of Cancer Recurrence Inventory (FCRI) (n = 3), and Lasry Fear of Recurrence Index (n = 1). The CARS and FCRI have established validity and reliability in the cancer survivor population,^34,46,47 and the Lasry Fear of Recurrence Index has high interitem correlation, but not established construct validity.⁴⁷ The CARS is the only tool used exclusively among breast cancer survivors to capture the multidimensional components of FCR, such as overall fear and worries in 4 domains: death, health, roles, and womanhood.³⁴ The qualitative studies^40,42,43 used in-depth, semistructured interviews.

There was inconsistency in the operationalization of “young adult” breast cancer survivor across all studies. Seven studies included women 45 years or younger,^14–20 whereas 3 studies included women younger than 45 years.^42,43,45 One study divided the sample into 4 age groups: younger than 34, 35 to 49, 50 to 64, and older than 65 years.⁴¹ Of the studies including women 45 years or younger, 2 compared a sample of younger and older survivors, defined by 18 to 45 and 55 to 70 years old, respectively (see Table 1).^15,20 Most studies set the lower age limit to 18 years.^{14,17–20,41–43,45} The remaining studies did not specify a lower age limit; however, all remaining studies enrolled participants older than 18 years,^15,16,40 with the exception of Rosenberg et al,⁴⁴ which included participants aged 17 to 40 years.

Four studies^15,20,42,43 did not report information on sample cancer stage. Three studies^17–19 (same data set) included participants with stage 0 to II breast cancer, whereas all others, excluding Connell et al,⁴⁰ included participants with stage 0 to III disease. Time since diagnosis ranged from 0 months to 15 years (eligibility criteria), although most studies required participants to be within 1 to 3 years since treatment. All participants across all studies currently had no evidence of disease except for 1 participant in Connell et al⁴⁰ who was still undergoing curative treatment of metastatic breast cancer (stage IV disease). Disease status for all participants was unclear in 1 study.⁴⁴

Prevalence of FCR was reported by 5 studies and ranged from 33.2%⁴⁴ to 70% of women.¹⁷ The FCRI-Short Form was the only tool with reported cutoff scores for clinical significance,^17–19 thereby limiting our ability to detect clinically significant levels of FCR across the studies.

Factors Associated With FCR

Demographic and Social Factors

Eight studies reported a significant association between FCR and young age.^14–20,41 The association between FCR and time since diagnosis was inconsistent across studies; 2 studies^16,17 did not report an association, whereas 3 studies^14,18,19 reported a decrease in FCR over time. Cancer severity (eg, cancer stage) was not associated with FCR in 4 studies^17–19,41; however, these results should be interpreted with caution because the inclusion criteria for cancer stage varied across studies. Four studies found no association between FCR and education level.^16–19 There was no association between FCR and religion, race/ethnicity, or income.¹⁶

Beyond demographic and social factors, the main themes that emerged from this integrative review include motherhood status, health and surveillance behaviors and surgical decision making, psychological morbidity, social support, and cognitive behavioral factors (eg, cognitive processing, metacognition, illness intrusiveness). The factors associated with FCR are displayed in Table 2.

Motherhood and Family Concerns

MOTHERHOOD STATUS

Five studies examined the association between motherhood status and FCR among young adult breast cancer survivors. Young adult breast cancer survivors with children had higher FCR compared with young adult breast cancer survivors without children (P = .002)¹⁴; however, a separate study found that all mothers, regardless of their age (P < .001), had elevated FCR.⁴¹ Young adult breast cancer survivors (≤40 years old) reported that children and family were their greatest general concern.⁴⁰ One study found no association between motherhood status and FCR (P = .5); however, the effect of motherhood status was not a central aim and so may have been underpowered to detect an effect.¹⁹ Elevated FCR co-occurred with psychological distress and illness intrusiveness among young adult breast cancer survivors with children, suggesting that FCR in the context of raising children may be particularly distressing.⁴⁵ However, the direction of the relationship between FCR, illness intrusiveness, and psychological distress is unknown but may be that FCR and illness intrusiveness within the context of raising children heighten psychological distress.⁴⁵

AGE OF CHILDREN

Findings were inconsistent for the association between the age of children and FCR.^14,40,41 Two studies found no association,^14,41 although young mothers with older children reported higher perceived stress (P = .046) and illness intrusiveness (P = .001).¹⁴ One study reported that most concerns were centered around raising very young children.⁴⁰ Specifically, mothers were concerned about how their very young children and partners would cope without them. For adolescents, more family responsibilities and a greater understanding of cancer's meaning had the potential to cause adolescents great stress.⁴⁰ Similarly, higher overall FCR was associated with motherhood status regardless of age of children (P < .001).⁴¹ Combined, these results suggest that mothers experience greater FCR regardless of their children's age.

Parenting stress was a significant predictor of FCR (P = .001).¹⁴ The combined effects of mother and children's age, time since diagnosis, and parenting stress accounted for 13% of the variance in FCR scores (P < .001).¹⁴ Combined, these results suggest higher FCR is not independently associated with children's age,^14,41 but young mothers reporting high levels of parenting stress may be at the greatest risk for FCR.¹⁴

Health Behaviors and Decision Making

SURGERY

Three studies explored the role of FCR in surgical decision making, such as undergoing a mastectomy compared with breast-conserving surgery (BCS).^40,43,44 A greater percentage of young women underwent a contralateral prophylactic mastectomy (CPM) when the surgical decision was driven by the patient compared with doctor, 59.9% and 5.6%, respectively.⁴⁴ Findings suggest that CPM may be protective of FCR. For example, when comparing young women who underwent CPM with those who underwent BCS, young women who underwent a CPM reported less worry about cancer recurring⁴⁴ and were almost twice as likely to report FCR as a major personal concern if they underwent BCS.⁴⁰ Although CPM did not entirely mitigate young women's perceived risk of recurrence,⁴³ they were more confident in their decision to undergo a CPM compared with BCS.⁴⁴ Qualitative data suggested that FCR persists despite undergoing a CPM because young women view their risk of breast cancer as an embodied risk—the perception that the risk of recurrence is inherent within one's body and not related to environmental or lifestyle factors.⁴³ Fears were centered on cancer hiding within their bodies; thus, the risk of recurrence persisted despite surgical removal of breasts.⁴³

SURVEILLANCE

Two studies explored the association between health behaviors (eg, adherence to breast self-examination and mammography schedule, unscheduled visits to healthcare provider) and FCR.^17,43 Higher FCR was associated with more frequent unscheduled healthcare provider visits (P = .01) and breast self-examinations (P = .02),¹⁷ which may be conducted obsessively as described in 1 study.⁴³ However, mammography or ultrasound in the past 12 months was associated with lower FCR (P = .001),¹⁷ suggesting that young women with high FCR may avoid mammography. Qualitative findings suggested that surveillance measures may contribute to avoidance behaviors because they are a reminder of embodied risk. Young women described the diagnosis of breast cancer at a young age as a disembodying experience, upending their perception of themselves as healthy and their confidence to understand their body and self-monitor for signs and symptoms of disease.⁴³ Thus, women felt more dependent on the healthcare system to deem them healthy.⁴³ However, various signs and symptoms of disease, combined with the understanding that the healthcare system is limited in the ability to detect diseases, reminded them of their embodied risk and incited fear that cancer is hiding in their bodies.⁴³ As a result, some women avoided surveillance visits, whereas some may conduct measures such as breast self-examinations obsessively.⁴³

Psychological Morbidity

Four studies explored the association between FCR and psychological factors. Young breast cancer survivors reported significantly higher FCR (P < .001), anxiety (P < .001), and depressive symptoms (P < .001) compared with older breast cancer survivors.¹⁵ Similarly, 1 study found that FCR was associated with trait anxiety (P = .001),²⁰ whereas the other found that state anxiety mediated the association between age and FCR.⁴¹ In the final study, psychological morbidity, measured by health anxiety, psychological functioning, and stressful life events, was associated with FCR (P < .0001).¹⁹ Among those reporting clinical levels of FCR, 43% of patients met criteria for generalized anxiety disorder and 36% met criteria for hypochondriasis.¹⁹ Combined, these results suggest that, although FCR is associated with various forms of anxiety,^15,19,20,41 it is also an independent phenomenon and not simply a manifestation of generalized anxiety disorder or hypochondriasis.¹⁹

Social Support and Constraints

SUPPORT

Six studies explored the role of social support among young adult breast cancer survivors.^{15,16,19,40,42,43} Emotional and physical support was the greatest unmet need (37%) (FCR is the greatest personal need) and was reported to not be age-appropriate for young women.⁴⁰ Specifically, young women wanted emotional support from other young adult breast cancer survivors who could relate to their unique concerns (eg, fertility, sex, other gynecological problems).⁴⁰ However, some women felt that their support system (eg, partner) reinforced their embodied risk by monitoring young women for signs and symptoms of disease and/or deeming certain behaviors to be risky.⁴³ Furthermore, young adult breast cancer survivors felt limited in their ability to open up about their experience because their support system perceived them to be back to “normal.” This “liminal state” of feeling neither healthy nor “normal” was heightened when interacting with women their age who had not been given a diagnosis of breast cancer.⁴²

Three articles examined the source of social support.^15,19,40 One study found that young adult breast cancer survivors report less spouse/partner support (P = .0006) compared with older adults¹⁵; however, the authors did not explore its association with FCR. Perceived social support, albeit a slightly different measure, was not associated with FCR (P = 1.0).¹⁹ Two studies^15,19 examined social support from family (eg, partner) and friends, whereas 1 study⁴⁰ also considered support needs from healthcare services and support groups (eg, age-appropriate survivors). These inconsistencies make it difficult to draw comparisons across studies regarding beneficial sources of support.

SOCIAL CONSTRAINTS

Two studies^15,16 explored social constraints, defined as the degree to which constraining behavior (ie, minimizing concerns, avoidance, discomfort discussing cancer) is perceived from their partner.¹⁶ Roughly 81% of breast cancer survivors and 78.8% of partners reported social constraints,¹⁶ and young survivors reported significantly greater social constraints compared with older survivors (P = .0119).¹⁵ Of note, FCR prevalence was also similar among young adult breast cancer survivors (52.3%) and their partners (53.6%) (r = 0.196, P < .05).¹⁶ Qualitative data suggested that young adult breast cancer survivors may hide their fears of recurrence because they feel a disconnect between their own sense of embodied risk⁴³ and the perception from others that they are back to “normal.”⁴²

Cognitive Behavioral Factors

Three studies assessed breast cancer survivors' perception of their diagnosis. Higher FCR was associated with cognitive processing related to social constraints,¹⁶ maladaptive metacognition,¹⁸ and illness intrusiveness.⁴¹

Cognitive processing, measured by intrusive thoughts and cognitive avoidance, mediated the relationship between social constraints and FCR among young adult breast cancer survivors (P < .001) and their partners (P < .001).¹⁶ Social constraints limited the ability to cognitively process the experience of a breast cancer diagnosis, and the lack of important dialogue was associated with higher FCR among both young adult breast cancer survivors and their partners.¹⁶

Metacognition, how an individual appraises or monitors their thought processes, guides an individual's response to physical and cognitive stressors.¹⁸ A cluster of responses, including self-focused attention, rumination, and a bias toward information that is threat related, is associated with our metacognition and may underlie emotional disorders. Worrying about symptoms of recurrence and its consequences may be associated with excessive monitoring for symptoms or avoiding reminders of cancer.¹⁸ Among young women with breast cancer, metacognitive style accounted for 36% of the variability in FCR, along with demographic and disease variables (change in R² of 0.26 when metacognitive style added to demographic and disease variables).¹⁸ The greatest metacognitive predictors of FCR were a negative belief about the effects of worrying (R² = 0.32) and wanting to control cognition (R² = 0.26).¹⁸

Illness intrusiveness is the degree to which an individual perceives a disease to have negative consequences on social, economic, and physical domains.⁴¹ Illness intrusiveness and state anxiety mediated the association between age and overall FCR (P < .001).⁴¹ The researchers concluded that the perceived degree of disruption and threat of disease, combined with anxiety, explained why younger women had higher FCR.⁴¹

Discussion

The focus of this integrative review was to gain a more comprehensive understanding of the factors associated with higher FCR among young adult (≤45 years old) breast cancer survivors. Findings suggest that the underlying mechanisms contributing to greater FCR are nuanced. For example, the diagnosis of breast cancer at a young age upends the perception of young age being equated with health,⁴³ and fear is driven by the uncertainty of recurrence and the burden of remaining cancer free for a greater number of years compared with older cancer survivors.⁴²

In addition, in this review, young women with children had higher levels of FCR compared with young women without children.¹⁴ However, all women with children, regardless of their age, reported high levels of FCR.⁴¹ This is consistent with other studies that found that FCR was more pronounced among mothers younger than 50 years⁴⁸ and that fear was centered on leaving young children behind, their own personal sense of loss, and their partners' ability to cope.⁴⁰

Notably, there were inconsistent findings on the influence of children's age on FCR in 2 studies included in this review. In 1 study, higher levels of perceived stress and illness intrusiveness reported among young adult breast cancer survivors with older children may be due to the more emotionally demanding challenges of parenting older children (eg, adolescents).¹⁴ Conversely, young adult breast cancer survivors with younger children may be presented with more physically demanding challenges.¹⁴ Unique issues relative to the age of the child may present nuances in perceived stress and illness intrusiveness, which may eventually exacerbate levels of FCR.

In addition, the experience of social constraints and the role of social support were significant themes that emerged from the studies in this review. Findings from the study of Connell et al,⁴⁰ a qualitative study, report that the lack of age-appropriate support, attributed to the rarity of breast cancer at a young age, limited women's ability to identify with others in support groups.⁴⁰ Identifying with survivors of a similar age may minimize social constraints by facilitating the cognitive processing of being given a diagnosis of breast cancer at a young age. Whereas Connell et al⁴⁰ reported that support is not age appropriate, Thewes et al¹⁷ found that participation in support groups and counseling was associated with higher FCR. Although use of these services may be related to the association between anxiety and depressive symptoms already present in patients with FCR,^19,20,41 it may be that inadequate social support is related to the quality of the support group and counseling services. Therefore, if age-appropriate support is indicative of more efficacious support, then it may be a significant need and current resources may not be adequate to manage FCR.

Findings from this integrative review support the need to consider how FCR may influence the health and surveillance behaviors of young adult breast cancer survivors. Young adult breast cancer survivors with high FCR may have poor compliance to surveillance measures, such as mammography, but more frequent unscheduled healthcare provider visits and self-administered methods of surveillance, such as breast self-examinations.¹⁷ This finding is consistent with the self-regulation executive function model, in which FCR may either contribute to dysfunctional preoccupation or, oppositely, avoidance.¹⁸

Systematic reviews report that, among breast cancer survivors, higher FCR is associated with either reassurance-seeking behavior or avoidance/denial coping.^28,29 Mammography, blood work, and healthcare visits may trigger FCR²⁰ and contribute to cognitive avoidance, a component of cognitive processing.¹⁶ Previous studies suggest that patients with high stress reactivity,⁴⁹ younger age, and mammography-related anticipatory anxiety⁵⁰ are less adherent to medical care and surveillance mammography. In 1 study,⁵¹ FCR levels increased before mammograms and decreased in response to negative results. Therefore, mammography may eventually infer a sense of security but also trigger higher FCR in the acute periods leading up to the test.

Findings from a systematic review, including mixed cancer types, suggests that symptom burden is associated with higher FCR²⁹; however, it is unknown whether FCR contributes to hypervigilance of symptoms or whether unrelated symptoms are attributed to signs of recurrence. Cognitive factors associated with adaptation to the diagnosis of breast cancer as a young adult that have been shown to influence FCR include confidence in disease management (eg, self-efficacy),²⁰ perception of disease consequences (eg, illness intrusiveness),⁴¹ beliefs about worry (eg, metacognition),¹⁸ and the ability to process the experience in a supported environment (eg, cognitive processing).¹⁶ For example, confidence in disease management among young adult breast cancer survivors may be protective of FCR.²⁰ Alternatively, young adult breast cancer survivors' metacognitive style (ie, believing that worry is harmful, seeking control over cognition) may place them at a greater risk for FCR.¹⁸ Young adult breast cancer survivors experience greater illness intrusiveness, which may be explained by a greater potential for life disruption and poorer coping skills due to less experience with illness and the healthcare system.²²

This integrative review also highlighted the role of FCR in surgical decision making. A greater understanding of the role of surgical decision making is imperative to guide young women who are given the choice, because peace of mind is often cited as a factor for undergoing a CPM.⁴⁴ In comparison, in 1 systematic review, mixed evidence was found on the role of FCR and surgical decision making including 8 studies that found no difference between surgical procedures, 2 studies that reported higher FCR among patients undergoing BCS, and 3 studies that reported higher FCR among patients undergoing a mastectomy.²⁸ Scarring from a mastectomy was found to remind women of their breast cancer; alternatively, the authors reported that women may experience higher FCR related to concerns that a lumpectomy may not have removed all of their cancer.²⁸

Strengths and Limitations

This integrative review contributes to the understanding of factors associated with increased FCR among young adult breast cancer survivors. The inclusion of both quantitative and qualitative studies strengthened our understanding of the phenomenon. However, all quantitative studies were cross-sectional and, therefore, cannot establish causation or draw conclusions about changes in FCR over time. Consistent with the lack of established criteria for clinical levels of FCR, only 3 studies reported a clinical cutoff for FCR.^17–19 Cross-comparison of prevalence and severity of FCR is difficult given the heterogeneity in psychometrics and presentation of results. External validity was limited in all studies because of the homogenous group of participants who were primarily non-Hispanic white with high levels of education and income. Nonresponse bias is another significant limitation to these studies. Participants with high levels of FCR may have been more inclined to participate. Alternatively, those with significantly high levels of FCR may not participate because of concerns that it may exacerbate levels of fear. Drawing conclusions regarding the association between young adult breast cancer survivors and FCR is also limited by the heterogeneity in the definition of a young adult breast cancer survivor.

This integrative review was also limited by the lack of heterogeneity in sampling. Numerous studies used the same research database for recruitment, and 3 studies with the same first author^17–19 used the same sample (N = 218) but addressed different research questions. Furthermore, Black women are disproportionately given a diagnosis of breast cancer at a young age²; however, the studies were not racially or ethnically diverse and did not capture this population and phenomenon.

Implications for Nursing Research and Practice

Fear of cancer recurrence should be screened as a component of care for all breast cancer survivors, with particular attention to the unique needs of young adults. The FCRI-Short Form has established validity and internal consistency⁴⁶ and may be easily expanded to screen breast cancer survivors. In accordance with the National Academy of Medicine recommendation, policy initiatives should focus on ensuring survivors receive survivorship care plans.³

Breast cancer survivors may need additional support during periods of surveillance, and excessive monitoring for signs and symptoms of disease and/or avoidance of surveillance measures are potential manifestations of FCR. Future studies should explore the association between health behaviors and FCR to ensure patient compliance with necessary means of surveillance while minimizing potential triggers of FCR, including unnecessary healthcare provider visits and breast self-examinations. In addition, a better understanding of how metacognitive style may influence FCR and its association with surveillance avoidance or excessive monitoring for signs and symptoms of disease is warranted. Additional education and support may also be appropriate for women given the choice between BCS and mastectomy, because surgical decision may be driven by and influence FCR.

Careful consideration should be taken to assess patients' support status, taking into account motherhood status and stage of life (eg, finishing education, early-stage employment, beginning intimate relationships, marital status). Future studies should explore the role of age-appropriate social support to facilitate cognitive processing,¹⁶ enhance women's disease management confidence,²⁰ and minimize illness intrusiveness.⁴¹ Inclusion of partners in future studies is warranted, because they have been shown to present with similar degrees of FCR and social constraints.¹⁶

A recent Delphi study proposed clinical characteristics of clinical FCR. This is a crucial step in improving the ability to identify individuals with clinical levels of FCR, allow for a comparison of FCR across studies, and establish criteria for individuals requiring intervention.³⁰ Furthermore, consensus should be reached regarding the standardization of age for “young adult” breast cancer survivors. Results from this integrative review suggest that young women with breast cancer experience high levels of FCR regardless of cancer stage; however, most studies excluded patients with stage IV disease. Therefore, future studies should be expanded to include women with stage IV disease, because these women's psychosocial needs cannot be ignored.

Conclusion

The major themes that emerged to support the association between younger age and FCR include motherhood status, health behaviors and decision making (eg, surgery and surveillance), psychological morbidity, and social support. Various cognitive behavioral factors including cognitive processing, metacognition, and illness intrusiveness also contribute. These findings suggest that FCR in young adult breast cancer survivors is a unique construct that requires further exploration and tailored interventions. A better understanding of these many factors will facilitate early identification of young women at the highest risk of FCR.