Revision of the fear of cancer recurrence cognitive and emotional model by Lee‐Jones et al with women with breast cancer

Abstract

Background

Fear of cancer recurrence (FCR) is among the top unmet concerns reported by breast cancer survivors. Despite the sizable literature on FCR, few theoretical models have been empirically tested. One of the most cited is the FCR model.

Aim

This study seeks to understand the nature of women's cognitive and emotional issues from FCR using specific guidance from the model by Lee‐Jones and to provide suggestions for modifications to the model based on empirical results from the reported experiences of women living with breast cancer.

Methods and results

A qualitative descriptive study using semi‐structured interviews was conducted at an urban hospital. Recruited by convenience sampling, 12 breast cancer survivors concerned with FCR and who had recently completed active treatment participated in the study. Seven thematic categories emerged from the women's descriptions of their cognitive and emotional experiences with FCR: (a) FCR is always there; (b) beliefs about risk of recurrence; (c) beliefs about eradication of cancer; (d) preferences not to seek information about recurrence; (e) derailment of normal life; (f) worries related to recurrence; and (g) need for support. Adjustments to the model by Lee‐Jones et al¹ specifically to women living with breast cancer include the addition of new variables—the fear is always present, a preference not to seek information, and the need for support beyond treatment—and the merging of two variables, anxiety and worry, as participants viewed these concepts as interchangeable and experienced in similar ways. Lastly, participants did not report any remorse related to not opting for more aggressive treatments.

Conclusion

The refinement of a more comprehensive FCR theoretical model, such as through the modifications derived from this study, provides a deeper understanding of breast cancer survivors' experiences with FCR and can more effectively guide health care professionals to develop appropriately tailored interventions aimed at decreasing FCR levels.

1. INTRODUCTION

Breast cancer is the most common cancer in women worldwide, and the number of survivors has been increasing.2, 3 The 5‐year survival rate has risen from 79% to 88%4 over the past 30 years, and this increase has been attributed to improved early detection via mammography and other treatment improvements.5 An increased survival rate means that more individuals are living with a cancer diagnosis and its long‐term effects such as concerns with fear of cancer recurrence (FCR). As observed by Thewes et al6 and Yang et al7 in their systematic review, many studies have focused on cancer survivors' experience of living with cancer as a chronic disease and pointed to FCR as the most prevalent unmet concern reported by survivors. The definition of FCR established through consensus at a 2015 meeting with FCR experts is “Fear, worry or concern relating to the possibility that cancer will come back or progress.”8 This fear has been shown to be common across all cancer types9 and to persist throughout the survival trajectory, remaining elevated 6 years post diagnosis.8, 10 According to recent systematic reviews11 with mostly breast cancer survivors, 39% to 97% report some degree of FCR, 22% to 87% report moderate‐to‐high degree, and up to 15% report high degree. Younger breast cancer survivors are more prone to experiencing FCR than older survivors.12, 13

Three recent systematic reviews conducted by Fardell et al,14 Simonelli et al,15 and Curran et al16 identified conceptual frameworks and theories applied to FCR such as the self‐regulation of illness or common sense model,17 the self‐regulatory executive function (S‐REF) model,18 the extended parallel process model (EPPM),19 the uncertainty model,20 a theory of cognitive adaptation,21 the meaning making model,22 a novel cognitive processing formulation for FCR,14 and a social‐cognitive processing model.23. However, there is no single, universally accepted theoretical model of FCR to guide the development of targeted interventions and understanding FCR,14 but Simonelli et al15 specify that it is inappropriate to rely on generic illness measurement tools or theoretical models that are not cancer‐specific as the basis for cancer research.

The model by Lee‐Jones et al1 based on Leventhal's self‐regulation model of illness (13) is chosen because it is the most commonly cited by researchers,24 it is specific to the oncology population, and it has a unique focus on the consequences of FCR.25 The model by Lee‐Jones et al1 is one of the first models to describe and define the components associated with FCR (see Figure 1). Lee‐Jones et al1 conceptualized FCR in terms of antecedents, cognitive and emotional aspects of FCR, and consequences. The three cognitive aspects in the model by Lee‐Jones et al1 are (a) past experience of cancer and its treatment, (b) knowledge base on topics such as cure and survival rates, and (c) beliefs about the eradication of initial cancer. According to this model, these factors influence an individual's perceived personal risk of recurrence. This perceived subjective risk has been shown to be inaccurate at most times and is either significantly underestimated or overestimated26 and has been associated with higher FCR levels.27 The model by Lee‐Jones et al1 identifies past experience with cancer as a central cognitive factor of FCR. A current FCR theoretical review does propose that certain life experiences, mainly involving cancer, can increase vulnerability to FCR.14 As for types of treatments, studies with breast cancer patients suggest that surgery type may have only a minor effect on FCR levels when compared with other factors such as psychosocial variables and social demographics such as younger age.11, 28 A patient's knowledge base, including that of cure and survival rates, was hypothesized by Lee‐Jones et al1 to affect perceived risk of recurrence, but the effect on FCR was not explained. This is where other more recent FCR models could shed further light on what Lee‐Jones et al1 had observed back14, 15, 16 in 1997. Whereas the model by Lee‐Jones et al1 put an emphasis how the content of each category affects FCR levels and may lead to negative consequences, more recently proposed FCR models have shifted from the content of the categories in the model to the processes defining survivors' FCR experiences.14, 15, 16 One such example is Fardell et al14 whose model posits that one's cognitive processes and an understanding of one's metacognition give rise to putative mechanisms that can lead to clinical levels of FCR. The other models have similarly proposed that cognition and emotions are tightly intertwined in their influence on the development of clinically significant levels of FCR. Further empirical assessment is thus needed to investigate the role of such mechanisms in the model by Lee‐Jones et al.1 At present, other FCR models14, 15, 16 also remain fuzzy and lack robust empirical testing into the roles of cognition and emotions, as they remain primarily focused on the assessment of anxiety in context of cancer anxiety (15), which further warrants renewed inquiry into the empirically developed FCR model by Lee‐Jones.1. Furthermore, although Custers et al24 attempted hypothesis testing of the model by Lee‐Jones1 with their study of over 460 breast cancer survivors, their model testing mainly focused on internal and external cures and consequences for behavioural responses, leaving out the assessment of the roles and impacts of cognition and emotions as a result of experiencing FCR.

Figure 1.

Lee‐Jones et al.1 Model of Fear of Cancer Recurrence (1) reprinted with permission from Lee‐Jones C, Humphris G, Dixon R, et al. Fear of cancer recurrence–a literature review and proposed cognitive formulation to explain exacerbation of recurrence fears. Psychooncology 1997; 6: 95–105

Several studies found that lower levels of FCR are associated with higher levels of education, possibly due to differences in knowledge about cancer and its implications including prognosis and treatment side effects.27, 29, 30 However, these results have not been consistently shown in the literature, with many other studies finding no correlation between the knowledge base and FCR levels.11 Beliefs about the eradication of initial cancer have also been hypothesized by Lee‐Jones et al1 to influence FCR levels. Beliefs about the eradication of cancer include the notion of personal vulnerability about cancer coming back, as evidenced by higher levels of FCR.31 To our knowledge, there has been no research directly investigating these beliefs. The emotional component of the model by Lee‐Jones et al1 includes (a) worry associated with cancer returning, (b) anxiety about cancer itself, and (c) remorse over not opting for more aggressive treatments. Although emotions are a component of the model by Lee‐Jones et al,1 they are not elaborated on adequately. The worry associated with cancer recurrence mostly revolves around (a) the possibility of death, (b) the effects of further treatment (eg, chemotherapy), and (c) additional threats to health such as difficulty coping with emotional distress, and recurrence leading to untreatable disease associated with greater pain.32, 33 The model also includes the element of anxiety about cancer. Although FCR can be viewed as a manifestation of generalized anxiety, some research has suggested that this is not the case.34, 35 Future research is required to determine how anxiety influences FCR.34 In the model, remorse over not opting for more aggressive treatments is present, but studies are still needed to determine whether greater treatment satisfaction helps to improve FCR. One study reported that treatment satisfaction levels mitigated the impact of high FCR on lower levels of quality of life.36

Since the seminal work of Lee‐Jones et al,1 there has been no assessment of the model for its current appropriateness for FCR. A qualitative, descriptive methodology is needed to provide a more in‐depth and up‐to‐date understanding of the complex, personal, and contextually embedded cognitive and emotional experiences of FCR for women diagnosed with breast cancer. Drawing on thick description of women's lived experience with cancer, the authors aim to explore the cognitive and emotional features of breast cancer survivors' experiences and assess the similarities and differences of these results with those corresponding components of the model by Lee‐Jones et al.1 Our study was anchored in two primary research questions: “How do breast cancer survivors who have completed active treatment describe their FCR both cognitively and emotionally?” and “How do these descriptions compare with the cognitive and emotional components of the Lee‐Jones et al1 model?”

2. METHODS

A qualitative descriptive design with semi‐structured interviews was chosen for this study to provide an in‐depth exploration of women's FCR experience and a thorough comparison with the model.37

2.1. Sampling

A convenience sample was drawn from cancer survivors receiving follow‐up care with their oncologists at an urban, multicultural cancer centre offering tertiary care. The inclusion criteria were (a) women over 18 years old who voiced experiences of FCR and who agreed to share their experiences; (b) diagnosed with breast cancer stages 0 to III with no previous cancer incidence; (c) no previous cancer recurrence; (d) completed active treatment except for adjuvant therapy; and (e) able to read and speak English or French.

2.2. Recruitment procedures

Recruitment occurred from August to December 2015. A nurse specialist in oncology contacted eligible women to determine their interest and obtained their permission to be contacted by a research team member. The research team member then phoned interested women to further explain the study and, based upon expressed interest, set a meeting at a mutually convenient time and place. Before each interview, the research team member conducting the interview obtained written informed consent. A copy of the consent form was also given to the participants.

2.3. Data collection

Individual, face‐to‐face semi‐structured interviews were performed and audio‐recorded. Interview lengths ranged from 45 to 75 minutes and took place at the cancer centre or the participant's home. An interview guide was developed, and the open questions reflected the cognitive and emotional components of the model by Lee‐Jones et al.1 Examples of questions included “Please tell me what was your experience like in having cancer and going through your treatment?” (Cognitions component) and “Looking at the diagram, can you tell me if and how this diagram is reflective of your experience such as, do you have remorse over not opting for more aggressive treatment?” (Emotions). Other interview sample questions are “Tell me if and how often you think of your cancer experience and what are the circumstances that made you think of your cancer experience?” (Cognitions); and “Tell me about the fear you experience when you think of the possibility of having a cancer recurrence” (Emotions).

The empirical saturation was reached after 10 in‐depth interviews, but the team took the decision to continue to 12 women to insure saturation. The additional interviews confirmed that data saturation was attained as nothing new was apparent but rather was obtaining “informational redundancy.”38 Accordingly to Gray et al,39 this number of participants is sufficient considering the scope of the study and the questions, which were narrow. Also, because the aim of the study was not to develop a theory, the data were rich, and the study design was descriptive, maximum variation sampling was not required. Demographic and medical information, including FCR levels, were obtained from each participant. Screening for FCR was measured using the severity subscale of the FCRI‐S40 using the clinical cut‐off of greater than or equal to 13. FCRI is a reliable and valid scale (reliability scores; α = 0.95 and construct validity; r = 0.68 to 0.77).

2.4. Data analysis

Recruitment, data collection, and analysis occurred iteratively over 6 months. Each transcribed interview was analysed line by line, using open coding. The codes, recorded in the margins of the transcripts, were words that specifically spoke to the cancer survivor's reflections of her cognitive and emotional experiences of FCR. Two of the authors independently open coded each transcript, compared their coding, and discussed the initial codes and categories with the other authors based on the qualitative data analysis method by Miles et al.41 Any discrepancies were resolved, and adjustments were made as needed.42 To create categories, data were constantly revisited until no new categories were identified.43 A concept map derived from the analysed data assisted in answering research question #1. The concept map was used for managing and understanding data visually thus helping make comparisons with the model by Lee‐Jones et al1 and answer research question #2. The demographic and medical data provided context to the qualitative data using frequency, mean values, and standard deviations (SD).

2.5. Ethical considerations

The research proposal underwent an internal science review at a local university and received research ethics board approval from the hospital where recruitment occurred (JGH #15‐090). To maintain anonymity, participants' personal information was removed, and the participants were identified with numeric codes that were utilized for transcription and subsequent data analysis.

3. RESULTS

Sixteen women were contacted, four of whom either did not answer when called three times or stated that they had reconsidered their interest in participating in the study. The final sample was composed of 12 women. The mean age of the women was 50.5 years. The majority were married with children. The clinical FCR screening results for 10 of the 12 women in the sample were above the clinical cut‐off of greater than or equal to 13. Demographic and medical information is shown in Table 1. Data analysis revealed seven categories that worked in parallel to represent the women's cognitive and emotional experiences with FCR: (1) FCR is always present, (2) beliefs about risk of recurrence, (3) beliefs about eradication of cancer, (4) preference not to seek information about recurrence, (5) derailment of normal life, (6) worries of reliving cancer, deteriorating, and dying from cancer, and (7) need for support beyond treatment. Although both dimensions of cognitive and emotional processing seemed to be working in parallel to inform the women's account, an initial attempt was made to differentiate them in the presentation of the results. Figure 2 presents these seven categories with suggestions for merging some concepts.

Table 1.

Participant demographic and medical characteristics (n = 12)

	M	SD
Age (in years)	50.5	13.5
Diagnosis (months since)	28.7	14.1
Treatment completion (months since)	16.7	13.6

	No.	%
Marital status
Single	1	8.3
Married or living common‐law	10	83.3
Widowed	1	8.3
Children
Yes	10	83.3
No	2	16.7
Level of education
College or CEGEP	3	25.0
University, undergraduate	5	41.7
University, graduate	4	33.3
Employment status
Student	1	8.3
Full‐time	5	41.7
Sick leave	3	25.0
Retired	3	25.0
Stage at diagnosis
Stage 0	1	8.3
Stage I	3	25.0
Stage II	5	41.7
Stage III	3	25.0
Lymph node involvement
Yes	8	66.7
No	4	33.3
Type of surgery undergone
Lumpectomy	4	33.3
Mastectomy, unilateral	2	16.7
Mastectomy, bilateral	3	25.0
Not specified	3	25.0
Family history of cancer
Yes	7	58.3
No	5	41.7
FCR level
0‐12	2	16.7
13‐36	10	83.3

Figure 2.

Results of the revision of the model by Lee‐Jones et al1

4. COGNITIVE PROCESSING OF FCR

4.1. FCR is always present

The women consistently mentioned that FCR is always present (n = 8), whether in the back of their minds or the foreground because of specific triggers. As explained by one participant:

The fear is constant. […] Sometimes it's in the forefront. Usually, that's not good. But if it's not in the forefront, it's in the background. And you think of it. And even in your happiest moment, you think of it. In your saddest moment, you think of it (P12).

Five women described how the cognitive response “I must have cancer again” (P03) was easily triggered by symptoms such as aches or pain. As the women often experience these reminders that cancer can recur, they have adapted their lives to be able to live with this fear. One way of “living with it” was emphasized by five of the eight women who consciously tried to avoid thinking about recurrence since it could be debilitating. Some believed that there is “no point” (P06) in thinking about recurrence because it cannot be controlled or prevented. Consequently, some tried to stay emotionally distant by attempting to control their thoughts by avoiding talking about their fears.

4.2. Cancer as a derailment from normal life (past experiences of cancer and its treatment)

In describing their experience of cancer and its treatment, a common expression used by the women was that the experience left them feeling like cancer had derailed them from a “normal” (P06) life and left them feeling lost and devastated. This feeling of lost was expressed by the uncertainty that remains following a cancer diagnosis of their true risk for recurrence which leaves them living with a constant fear. Women who felt they had experienced delays in their initial diagnosis of cancer (n = 6) expressed living with this notion of uncertainty that future cancers may go undetected, keeping their FCR on “high alert” (P07). Again, many participants expressing that this is no way to live.

4.3. Beliefs about risk of recurrence

The women had differing beliefs regarding the risks of cancer recurrence. They mentioned factors that they perceived as placing them at a higher risk of recurrence such as genetics (n = 3), being overweight (n = 2), and having a sedentary lifestyle (n = 2). These women often adopted lifestyle changes to potentially prevent cancer recurrence, including altering their diet (n = 5) and beginning to exercise (n = 3). Shared knowledge about recurrence included cancer recurrence cannot be controlled (n = 5), recurrent cancer is usually more aggressive (n = 4), and cancer recurrence is more likely to occur in the first 2 years posttreatment completion (n = 2). One woman explained: “With cancer, I understand one thing, which is, you cannot control everything, there's something you will never control. I mean, recurrence of my cancer, is a fear for me, but, I cannot control if a recurrence will happen” (P03).

4.4. Beliefs about eradication of cancer

When discussing their beliefs about the eradication of their primary cancer, most women (n = 11) believed they did not currently have cancer. However, five of these women expressed doubts as to whether the belief of complete eradication was realistic. One woman explained:

I mean I would like to believe [that my cancer is completely gone], let us put it that way you know. I mean that's why that's what keeps you going through it [cancer]. Whether I believe it? I think, no, I think that one always, that there is a percentage of fear (P06).

Four other women shared that there was always a possibility that a cancer cell may still be present in their body, unbeknownst to them. Despite these concerns, participants spoke about trusting their physician's advice related to treatment selection (n = 6) and expressed confidence in current technology and medical advances (n = 2). Along with the belief that their cancer was removed entirely for 11 of the 12 women, no pattern was observed from these women's FCRI scores. One woman was convinced that her cancer was not entirely removed, doubted if she could trust oncologists if her cancer recurred, and believed that a recurrence was inevitable; her FCR level was above clinical cut‐off.

4.5. Prefer not to seek information about recurrence

The need for information about cancer recurrence varied between participants. However, most participants believed that overwhelming amounts of information and particular types of information such as recurrence statistics could be a source of distress. Six participants expressed a preference not to seek information about recurrence and stated that they avoided research altogether. While the other six women did look for information, three stated that they eventually stopped. These women divulged that once they began to research, they got “swirled up” (P04) and spent several hours a day researching. Therefore, the idea of further research seemed to provoke panic, as one participant explained:

I decided not to check [information about recurrence]. I decided not to go on the Internet, or read, or go through all that. Because, [...] I know there's a lot of information out there, and there are good ones, and there are bad ones. And I decided not to go through that. Because I am someone who'll panic a little bit, and [then] much more (P02).

Nonetheless, three participants perceived some general information about recurrence as being beneficial. For instance, reading other women's similar experiences was considered comforting (n = 1). Another woman reported that knowledge of cancer prevention strategies made her more optimistic because she feels that she can reduce her risk of recurrence. The latter participant scored below the clinical cut‐off on the FCRI, perhaps indicating that a sense of perceived control may have affected her FCR level.

5. EMOTIONAL PROCESSING OF FCR

5.1. Worries of reliving cancer, deteriorating, and dying

The women described their worry about a possible recurrence as rooted in their fears about death and dying, the cancer treatment itself, and functional deterioration. The most common worry expressed by women was the fear of death and dying (n = 10). Participants associated the word cancer with death (n = 5) and referred to it as the “most fearful word in the dictionary” (P08). This fear revolved around leaving their families behind (n = 8) and not being ready to die (n = 2). Additionally, the fear of facing cancer treatment again was also a source of worry (n = 4). As explained by one woman: “I think the fear of recurrence, [...] it's more the fear of the treatment […] because you know now what it implies” (P05). Other women explained that the side effects of cancer treatment, including their perceived changes in health status and body image, are also sources of worry. Finally, women spoke of the worry of functional deterioration due to a more aggressive recurrent cancer, which may be “untreatable” (P04). One woman mentioned that functional deterioration would have a great impact on her life. She explained: “Emotionally, this is what the meaning of recurrence means to me. It's that I would lose my independence and it would change my quality of life [...]” (P06).

5.2. The need for support beyond treatment

While the women expressed having adequate support from health care professionals during treatment, they also revealed an abrupt change upon treatment completion (n = 2). As one woman explained:

Going through treatment, it wasn't bad at all because I felt secure. I had a safety blanket which was my doctors. I would see them all the time, so they are like ‘You are doing great, keep going,’ like ‘scans look good, keep going’ [...] And then, the second I finished treatment, […] I wasn't really as important. [...] so I am like ‘Well, why not now?’ My concerns are just as important now as it was in the middle of treatments (P01).

The women interviewed often expressed the need for constant reassurance. When speaking of survivorship and FCR, one woman analogized breast cancer survivors experiencing FCR with “soldiers suffering PTSD upon returning from war” (P08). She expressed that one of her main concerns was that there is a need to communicate this fear to health care professionals; however, she felt that her oncologist did not adequately address the topic. Most women also expressed a strong need for more emotional support from health care professionals (n = 9) along with support need for follow‐up care guidance and how to manage the late effects of cancer treatment.

5.3. Comparing women's account to the model by Lee‐Jones et al1

When contrasting the results of this study to the model by Lee‐Jones et al1 based upon breast cancer population, similarities and differences in FCR components were noted. Figure 2 compares the model by Lee‐Jones et al1 to the results obtained in this study, and Figure 3 presents a revised model based on the women's accounts. First, in the study, we did not find a clear separation between the cognitive and emotional components of FCR as presented in the figure model by Lee‐Jones et al.1 The women instead expressed their cognitive perspective of FCR enmeshed with emotional terms using the word worry along with their perceived risk of cancer recurrence. However, we recognize that for research and training purposes, it might be helpful to place these two theoretical distinct components as entities for detailed study of each. Still, the recommendations are to seek further needs for improvement of the model by Lee‐Jones et al1 and there needs to be continued, incremental improvement in the model as new empirical information becomes available. Second, the components of knowledge base and beliefs about eradication highlighted in the model are comparable to the results of this study. However, the women provided more detailed descriptions of these concepts such as viewing cancer as a “derailment from their normal life” and shaping their experiences with cancer. Third, beliefs about the risk of and preference not to seek information about recurrence can be regarded as part of the knowledge base. However, it is unclear whether knowledge base would also include “a preference not to seek information about recurrence” as it was not specified in the initial theory. Fourth, worry associated with cancer returning, and anxiety about cancer itself also emerged in this study's findings, with worries related to cancer recurrence being more prominent than worries about cancer itself. Fifth, the concepts of FCR going along with the need for support beyond treatment are newly proposed elements. Finally, “remorse over not opting for more aggressive treatments” was not expressed by any of the study participants who often trusted their oncologists and believed that they received the most appropriate treatment available, which was mentioned in the model as beliefs about the eradication of cancer. Hence, in contrast to the model by Lee‐Jones et al,1 the study findings suggest that both the cognition and emotions components of the model would best be served combined and not separated. Further, the women's accounts of their FCR experience suggest the possibility of merging three concepts from the model—beliefs about the eradication of cancer, worries associated with cancer returning, and anxiety about cancer—into worries of reliving cancer, deteriorating, and dying.

Figure 3.

Proposed revision of the 1997 FCR model by Lee‐Jones et al1 for breast cancer survivors

6. DISCUSSION

When comparing the results of this study to the model by Lee‐Jones et al,1 similarities and differences in FCR components were noted. In this study, we did not find a clear separation between the cognitive and emotional elements of FCR since participants' thoughts and emotions were enmeshed. This result is also reflected in the common sense model, in the proposed conceptual model of Simonelli et al,15 the model of cancer related anxiety of Curran et al,16 and the metacognition model by Fardell et al14 where the authors indicate that the cognitive and emotional components are closely aligned with interacting effects to influence levels of FCR. From a professional point of view, differentiating between cognition and emotional impact of FCR such as in the common sense model may provide for a better understanding of the individuals' experience with FCR and their coping styles. In practice, however, the revised model proposed in Figure 3 of this study may be more suited to assisting individuals to reflect upon their own FCR experience by providing a model that is more likely aligned with how they experience FCR on a day‐to‐day basis. As such, in this study, the ways in which women described their experiences with FCR both cognitively and emotionally demonstrate that these two concepts occur concurrently and seldom separately. That is, cognitively, a woman could perceive that she is at higher risk of recurrence because she had cancer in the past, triggering emotional worries about her cancer returning. This is also demonstrated in the study of Soriano et al.25 The study provided more explicit notions to the concepts highlighted under cognition such as viewing cancer as a derailment from normal life and shaping their past experiences with cancer. To the knowledge base, study findings point to the need to add a preference not to seek information about recurrence. The impacts of information and information‐seeking are not adequately reflected in the model by Lee‐Jones et al,1 and a revision of these variables is warranted with the drastic change in the amount of information now available to people, most notably through the Internet. Similar to the study by Kyriacou et al33 where they provided revisions to the FCR model by Lebel et al,44 genetic vulnerabilities were identified as new elements to be added to the FCR model based on their findings that the women viewed genetics as playing a part in their risk of recurrence. Also, online communities for breast cancer survivors, such as support groups and forums where personal illness experiences are discussed, have also dramatically expanded since the development of this model.45, 46 These new resources could help address the need for additional support beyond treatment voiced by most of the study participants.

Under the category of emotions, our findings were similar to the model by Lee‐Jones et al,1 but our results reflected the worries and fear of cancer recurrence as opposed to general worries with cancer. Our recommendations are to merge these two concepts into fear of death and treatment with cancer returning. The formulation of this merger would also reflect FCR's new consensus definition.8 Other support for the merger of cognition and emotions comes from recent reviews of the model by Lee‐Jones et al1 by Barracliffe et al.47 The authors provide qualitative and diary support of the model by Lee‐Jones and their findings points to the parallel underplay of cognitions and emotions processed simultaneously when cancer survivors experience FCR. Reflecting on the many other FCR models that have emphasized the intertwined nature of cognition and emotions such as with the metacognition theory approach by Fardell et al,14 the proposed revised model again highlights this unique evolving empirical finding to FCR models.

From our study, two additional concepts are proposed: FCR is always there and the need for support beyond treatment. Both concepts were not found in the original model. While our study limitations cannot lead us to conclude on this last difference from the original model by Lee‐Jones, we do want to point out that in this study, remorse over not opting for more aggressive treatments was not expressed by any of the participants who often trusted their oncologists and believed that they received the most appropriate treatment available, which was mentioned in “beliefs about the eradication of cancer.” Additional investigations will be needed to assess how and in what ways this variable influences levels of FCR. Finally, the proposed model in Figure 3 has much to offer the revision of the model by Lee‐Jones by the inclusion of the new variable “fear of recurrence is always present” rather than having this experience as an understatement. Considering that FCR is one of the most reported concerns by cancer survivors48 with previous research reporting prevalence rates of FCR ranging between 39% and 97%,30 including this variable directly in the model seems warranted.

This study's findings are consistent with literature showing that women perceive a loss of support from health care professionals when transitioning from active treatment to survivorship.33, 49 This perceived loss of support has been shown to coincide with treatment completion at a time when FCR tends to be most prevalent.50, 51 It may be due to the decreased frequency of follow‐up appointments leading to a feeling of abandonment and an increase in uncertainty after treatment completion.50 Although the need for support was omitted as a component affecting FCR levels in the model by Lee‐Jones et al,1 the authors did mention that advice‐seeking is a behavioural consequence of FCR. Participants in this study commonly expressed the importance of psychological support. Therefore, explicitly mentioning this psychological need in the section of the model about components affecting FCR may be required.

The present findings add to those of the systematic review by Simard et al11; we further define what is meant by feeling unsatisfied with care. In this study, we found that although the majority (80%) of participants preferred not to seek additional information on their symptoms and risk of recurrence, they do seek to obtain additional information for the long and late effects of cancer and its treatment. These results indicate that the participants are experiencing a lack of connection to their past oncology care team, feelings of being let go, and insufficient support posttreatment. In many instances, the data from our study provides rich detail and in‐depth description to some of the associations made in the systematic review by Simard et al.11

6.1. Study strengths and limitations

One of the strengths of this study is its empirical saturation. Empirical saturation was obtained and agreed by peer debriefing during the group discussions. However, although a theoretical saturation of themes was not the intent of this study, as required in a grounded theory study for example, we suggest that further inquiries seek to obtain deeper interpretations to two emerging themes found in this study. These are the concepts “FCR always present” combined with the “need for support beyond treatment.” These two themes would require more explanation because they are newly proposed revisions to the model. The audit trail and the member checks with the participants also contributed to the study trustworthiness as well as to the thick description of the phenomenon under scrutiny which is the fear of cancer recurrence. The in‐depth methodological description in this study needs to be repeated and to assure the dependability. Finally, the research team paid close attention to the experiences and ideas of the key informants rather than their characteristics and their preferences which are associated with the research confirmability.52

On the other hand, the study transferability is delimited to women with those specific sociodemographic characteristics such as the recruitment location and the educational level (the participants all completed college or university), which may or may not affect FCR levels.30 To address this limitation, the authors included a table summarizing the participants' descriptors and offering a thick contextual description to enable the reader to make the transfer. Additionally, the higher than usual rate of individuals scoring above the clinical cut‐off of 13 and above on the severity subscale of the fear of cancer recurrence inventory found in this study (n = 10/12; 83%) compared with usual rate found in the literature of 45% may not be representative of breast cancer survivors in general,11, 30 and this difference may be explained partially by a selection bias. That is, participants in this study were approached by their nurse. The nurse might have been biased in approaching only those individuals who she assessed to be experiencing issues with fear of cancer recurrence. However, the identification of individuals experiencing clinical levels of FCR may be dependent on the cut‐off used. Recent literature points to a higher cut‐off as high as 22 for identifying clinical levels of FCR with the use of the short form severity subscale of the FCRI.14 However, the “always thinking of recurrence” finding from this study is reflective of a common characteristic usually found in individuals experiencing clinical levels of FCR.8 A recommendation for future studies could be the use of quantitative methodological approaches to offer further validation and improvement of this model.

6.2. Clinical implications

The in‐depth description provided from this study of the cognitive and emotional experience of FCR can serve as an interview guide to assist health care professionals in assessing how FCR affects their patients. A study by Thewes et al53 indicated that FCR was underrecognized and that only a minority of women with high levels of FCR were being offered support. As health care professionals increase their FCR knowledge, appropriate interventions could be established and may lead to patients feeling more supported. Ultimately, the need for greater perceived support may improve the quality of life of breast cancer survivors.54

7. CONCLUSION

There is current movement to conduct empirical investigations of FCR, determine its theoretical components and better understand the consequences of FCR to one's health. When these data become available, they will provide further insight into how to conceptualize, measure, and intervene in the management of FCR.55 At this time, the existing theories relevant to understanding FCR, such as the revised model by Lee‐Jones et al1 presented in this study, provide novel conceptualizations of the construct of FCR. The proposed revisions offer researchers and clinicians considerations on how and where to intervene to more effectively manage FCR.

CONFLICT OF INTEREST

The authors have stated explicitly that there are no conflicts of interest in connection with this article.

AUTHORS' CONTRIBUTION

All authors had full access to the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Conceptualization, C.M., M.H., J.L., T.‐R.Y., S.L., A.C., A.B., J.K.; Methodology, C.M., S.L.; Investigation, C.M., J.L., T‐R.Y., S.L., A.C., A.B., J.K.; Formal Analysis, C.M., M.H., J.L., T‐R.Y., S.L., A.C., A.B., J.K.; Resources, C.M.; Writing ‐ Original Draft, C.M.; Writing ‐ Review and Editing, C.M., M.H.; Visualization, C.M., M.H.; Supervision, C.M.; Funding Acquisition, C.M.

Maheu C, Hébert M, Louli J, et al. Revision of the fear of cancer recurrence cognitive and emotional model by Lee‐Jones et al with women with breast cancer. Cancer Reports. 2019;2:e1172. 10.1002/cnr2.1172