Experiences of women with breast cancer disclosing cancer-related cognitive impairment symptoms to health professionals: a Systematic review and meta-synthesis

Abstract

Objective

Cancer-related cognitive impairment involves changes in cognitive domains among people diagnosed with cancer. This review aimed to explore and synthesize the experiences of women with breast cancer disclosing cancer-related cognitive impairment symptoms to health professionals.

Methods

A systematic review and meta-synthesis was conducted to generate synthesized findings from existing literature. Six databases were searched from inception until mid-October 2022, with eligible studies appraised using the QualSyst Quality Assessment Checklist.

Results

Three synthesized findings were generated from eight included studies. Findings highlight that women initiated conversations disclosing symptoms and frequently experienced dismissal or minimization from health professionals. Women rarely received information about cognitive impairment symptoms before treatment. Women reported that health professionals could be more involved in managing cognitive impairment symptoms.

Conclusion

This meta-synthesis highlights the importance of health professionals providing information before treatment and following up on cognitive impairment symptoms.

Keywords:

• Breast cancer
• cancer
• cancer-related cognitive impairment
• health professionals
• oncology
• review

Problem identification

Breast cancer is the most commonly diagnosed cancer in women globally, with approximately 2.3 million new diagnoses annually.¹ Due to advances in screening, diagnosis and treatment, breast cancer survivorship has improved significantly in many countries, including the United States and Australia, with the five-year survival rate increasing from 70% in the 1980s to over 90% in 2022.^2,3 This increase in survivorship has led to research investigating the long-term adverse effects of cancer treatment on people’s post-treatment life, such as cancer-related cognitive impairment. Cancer-related cognitive impairment, also commonly referred to as ‘chemotherapy-related cognitive impairment’, ‘chemobrain’, or ‘chemofog’,⁴ involves changes in executive functioning domains, including attention, information and processing speed, problem-solving, planning abilities, and memory retrieval.^5,6 The type and severity of cognitive deficits that people with cancer experience vary significantly, including problems with concentration, attention, memory loss, abstract reasoning, visuospatial abilities and motor function.^7–9 The estimated prevalence of cancer-related cognitive impairment is 12–82% in women with breast cancer,¹⁰ with more recent findings suggesting that one in three women with breast cancer may experience clinically significant cognitive impairment.¹¹

Researchers have proposed numerous mechanisms for cancer-related cognitive impairment due to toxic chemotherapeutic agents, especially in high-dose cases.¹² These mechanisms include the production of pro-inflammatory cytokines,¹³ vascular injuries, oxidative damage, autoimmune responses, and the presence of apolipoprotein Ee4 allele.^14,15 Changes in hormone levels, including low estrogen and progesterone, during chemotherapy or other anticancer hormonal treatments have also been hypothesized to impact cognitive performance.^16,17 However, as cognitive impairment symptoms have been reported to arise before chemotherapy, it is difficult to determine which mechanisms are specifically due to chemotherapy rather than cancer itself.^6–8

Individual factors, including genetics, age, education, and treatment-induced menopause, may also influence the presentation and severity of cognitive impairment symptoms.¹⁸ In addition, psychological factors that occur after cancer diagnosis and treatment, such as anxiety or depression, can significantly influence cognitive functioning.^7,19 Physical changes common to cancer and its treatment, including pain, fatigue and sleeping difficulties, may also significantly impact cognitive functioning.^20,21

Cognitive impairment symptoms can subsequently influence women’s emotions and sense of self. Women with breast cancer have reported feeling frustrated,^22,23 upset or frightened,^22,24 misunderstood or embarrassed, reduced self-esteem and self-confidence, and that their symptoms cause distress when completing daily living tasks (e.g. paying bills or driving).^23,25,26 Cognitive impairment also adversely impacts work performance, making people utilize compensatory strategies to complete work and causing increased frustration and fatigue.⁹ Furthermore, stress, fear, worry, frustration, insecurity and low-spiritedness influence many women’s decisions to return to work after breast cancer treatment.²⁷ Despite the significant impact cancer-related cognitive impairment can have on a person’s quality of life, previous findings have highlighted issues in communication between women and health professionals regarding cognitive impairment symptoms. Women have reported that their medical team have dismissed their concerns²² and that they have not received post-treatment assessment for cognitive changes.²⁶ Conversely, women experiencing symptoms may also not discuss their cognitive impairment symptoms with their healthcare team. For example, Cheung et al.²⁵ found that among 193 oncology practitioners (oncologists, nurses and pharmacists) practising in Singapore and Thailand, approximately 47% expressed neutral views or disagreed that people with cancer frequently report cognitive impairment.

Recent research exploring the perspectives of health professionals working with people with cancer found that professionals’ responses to cognitive impairment symptoms depend on their years of cancer-related clinical experience and their prior understanding of cognitive impairment.²⁸ Health professionals’ discipline also determined the support provided to patients, with oncology nurses providing reassurance and basic strategies to assist with memory and oncologists validating the person’s symptoms.²⁸ Health professionals have identified that barriers to raising discussion about cancer-related cognitive impairment include a lack of clarity about the proposed mechanisms underlying cognitive impairment, lack of clinical practice guidelines for symptom management, financial constraints within public hospital systems and limited time during follow-up appointments.^28,29 Despite cancer-related cognitive impairment significantly impacting women with breast cancer, health professionals may be reluctant to discuss these symptoms, as screening tools and practical guidelines for managing cognitive impairment symptoms are absent. In addition, more needs to be understood regarding women and health professionals’ interactions regarding cancer-related cognitive impairment symptoms. The current review aimed to explore and synthesize women’s experiences disclosing cancer-related cognitive impairment symptoms to health professionals. Recommendations generated from this review may inform ways to improve healthcare practice.

Literature search and data evaluation

Design

We used a systematic review with meta-synthesis, conducted as per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.³⁰ Data were synthesized via a meta-aggregative approach to amalgamate findings from existing qualitative studies.³¹ A key strength of the meta-aggregative approach is that it allows researchers to synthesize qualitative research in a way that maintains the original context and sensitivity of individual qualitative research studies and is comparable to the rigorous processes applied to meta-analyses of quantitative studies.³² A meta-aggregative approach is well-suited to addressing questions about healthcare practice.³³ It can inform evidence-based healthcare by synthesizing existing qualitative research³⁴ to generate recommendations to guide health professionals and policy-makers.³⁵ We initially employed a deductive approach to examine data according to our primary research aim. However, as we had no pre-conceived ideas about what women would express about their disclosure experiences, we utilized an inductive approach when developing categories and sub-categories to organize the data and generate synthesized findings. Additionally, we took an inductive approach in relation to other pertinent information that women shared in the included studies. As a result, we developed two other secondary research aims: to explore and synthesize women’s (i) experiences of cancer-related cognitive impairment symptoms and (ii) coping strategies and intervention preferences, as this information provides important context to understand women’s experiences of disclosure. Ethics approval was not required as we conducted a systematic review and meta-synthesis of preexisting data. This review was pre-registered on PROSPERO (CRD42022375403).

Search strategy and data collection

Six online databases (CINAHL, Embase, Medline, PsychINFO, PubMed and Web of Science) were searched from database inception until mid-October 2022 and imported into EndNote to identify qualitative studies that had examined women who have been diagnosed with breast cancer’s experiences of disclosing cancer-related cognitive impairment symptoms to health professionals. A search strategy using individual search terms and controlled vocabulary was customized to suit each database, including terms such as “chemotherapy-related cognitive impairment”, “chemobrain”, “chemofog”, “breast cancer”, “breast cancer survivor”, “health professional”, “health practitioner”, “qualitative” and other variants deemed appropriate. We consulted a research librarian to optimize the search strategy. Alerts were created to ensure studies published after the initial search were examined for possible inclusion.

Selection criteria

Studies were included if they (i) investigated women diagnosed with breast cancer’s experiences of disclosing cancer-related cognitive impairment to a health professional, (ii) presented qualitative data (mixed methods papers were eligible if qualitative data were reported separately and in sufficient detail), and (iii) were published in English in a peer-reviewed journal. Data were considered qualitative if collected via qualitative data collection methods (e.g. interviews, focus groups) or analyzed using qualitative research methods (e.g. thematic analysis). Studies were excluded if they (i) were quantitative, (ii) were not published in English in a peer-reviewed journal, (iii) did not report primary data (e.g. opinion pieces, book reviews), or (iv) did not report full data (e.g. conference abstracts, brief reports).

Quality appraisal

All authors independently appraised the reporting quality of each eligible study using the QualSyst Quality Assessment Checklist.³⁶ This appraisal tool considers methodological rigor and quality of studies across 10 criteria. Each study was appraised as to whether it met each of the criteria (“Yes” = 2, “Partial” = 1. “No” = 0). A summary score was calculated for each study, which involved summing the score obtained for each item and dividing by the total possible score (20), yielding a score between 0–1, where higher scores indicate higher quality. Variation in quality assessment was resolved through discussion between the three researchers. Kmet et al.³⁶ report a liberal cutoff score of .55 and a more conservative score of .75. In this meta-synthesis, we selected the liberal cutoff to avoid giving a restricted summary of the limited research in this area. However, seven studies scored above the conservative cutoff score of .75, and the remaining study scored .70.

Data extraction and synthesis

The 21-item Enhancing Transparency in Reporting the Synthesis of Qualitative Research guidelines (ENTREQ;³⁷ See Supplementary Table 1) guided reporting of this meta-synthesis. A study-specific data extraction sheet was used to gather study characteristics and relevant findings from the included studies. Data extracted from each study included (i) sample characteristics (e.g. sample size, age), (ii) study characteristics (e.g. aim, location, research design, recruitment source, analysis methodology), (iii) breast cancer characteristics (e.g. age at diagnosis, stage of treatment) and (iv) cancer-related cognitive impairment characteristics (e.g. impacts, experiences of disclosure, coping strategies).

After extraction, relevant original findings from each of the included studies were identified and extracted verbatim in the form of categories or themes, along with illustrative extracts/quotes. All extracted findings were then grouped into categories based on shared meaning, and then these categories were combined into a series of synthesized findings to address the research aims.³⁸ All authors agreed upon the final synthesized findings.

Data evaluation and synthesis

Study selection

The initial search resulted in 168 results (See Figure 1). After removing 62 duplicates, 106 studies were screened by title and abstract. After applying the inclusion/exclusion criteria, 76 studies were excluded, leaving 30 studies for full-text screening. The first and second authors co-screened all 106 records to reduce data-selection bias. Interrater agreement was high (96%, K = .90), with any discrepancies resolved by consensus discussion. During the full-text review, 22 studies were excluded, resulting in eight studies eligible for inclusion to be assessed for methodological quality. After quality appraisal, all eight studies were of sufficient quality to be included in the meta-synthesis.

Figure 1. PRISMA flow chart illustrating the study selection process.

Study characteristics

Table 1 summarizes the key characteristics of the included studies. The studies were published between 2009 and 2018, with most originating from the United States of America (N_studies = 4). Qualitative data were collected predominantly through interviews (N_studies = 7). Researchers used thematic analysis (N_studies = 4) or content analysis (N_studies = 4) to analyze data.

Table 1. Summary of included studies.

Lead Author (Date)	Country	Sample Size (N = 225)	Recruitment Strategy	Data Collection	Data Analysis	Quality Score
Bolton (2018)	Australia	50	Email to members of the BCNA	One-on-one telephone interviews	Qualitative description framework (thematic analysis)	.75
Boykoff (2009)	USA	74	Flyers in multiple cancer wellness centers, doctor’s offices and support group meeting sites	Focus groups and individual interviews	Ethnographic content analysis	.85
Crouch (2017)	USA	13	Flyers in a breast cancer treatment center	One-on-one telephone interviews	Content analysis	.85
Munir (2010)	UK	13	Two local support groups affiliated with a national cancer support charity	Focus groups	Template analysis (thematic analysis)	.85
Munir (2011)	UK	31	An NHS hospital breast cancer clinic	Interviews (face-to-face or telephone)	Content analysis	.85
Player (2014)	Australia	9	Email to members of the BCNA	Interviews (face-to-face or telephone)	Thematic analysis	.85
Rosedale (2010)	USA	13	Volunteer list from a cancer survivor network	Interviews	Thematic analysis	.70
Von Ah (2013)	USA	22	Mailed eligible participants from an Institutional Review Board-approved registry	Interviews	Content analysis	.85

Note. UK: United Kingdom; USA: United States of America; BCNA: Breast Cancer Network Australia; NHS: National Health Service.

Reporting quality of included studies

Figure 2 summarizes the reporting quality results of all included studies, as assessed using the QualSyst Quality Assessment Checklist³⁶ (for a detailed assessment of each study, refer to Supplementary Table 2). All studies fully met 5 of the 10 criteria. For example, all studies described the study design and context, connected the study to a wider theoretical framework, reported data analysis methods and described conclusions supported by the results (Items 2–4, 7 and 9; 100% fulfilled). In addition, most studies fully met criteria concerning a clear statement of the study’s research question/s and/or objectives, a description of data collection procedures, and employed verification procedures to help establish credibility (Items 1, 6, 8; 87.5% fulfilled). However, most studies only partially met the criteria for clearly describing and justifying their sampling strategy (Item 5; 37.5% fulfilled), and no researchers explicitly assessed the impact of their characteristics and experiences on the research process through a reflexivity statement (Item 10; 0% fulfilled).

Figure 2. Reporting quality of included studies using the QualSyst quality assessment Checklist.³⁶

Participant characteristics

The sample comprised 225 women diagnosed with breast cancer who experienced cancer-related cognitive impairment (N_studies = 8). Participants were aged 30–80 years (N_studies = 7; N_{participants =} 212), with a mean age of 49.82 years (SD = 3.76) (N_studies = 5; N_participants = 88). Most studies did not report participants’ race (N_studies = 5; N_participants = 118, 52.44%); where race was reported (N_studies = 3), 65 participants were ‘Caucasian’ (28.89%; this was the term used by the authors of included studies), 40 were African American (17.78%), and 2 were unspecified (0.89%). Fifty-five participants (N_studies = 4) were married (24.44%), 47 participants were divorced or single (20.89%), and 14 participants reported other circumstances (e.g. widowed, living with a partner but not married) (6.2%). The average age at breast cancer diagnosis was 44.23 years (SD = 7.43) (N_studies = 2; N_participants = 22). Stage of diagnosis varied, with data reported for 30 participants (N_studies = 2), indicating participants were primarily diagnosed with Stage II breast cancer (n = 18, 8%), while 6 participants were diagnosed with Stage 1 (2.67%), and 6 with Stage III breast cancer (2.67%).

Surgical treatment was common, with 119 participants (N_studies = 3) undergoing surgery (52.89%) for breast cancer. Participants also underwent chemotherapy (n = 70, 31.11%), radiotherapy (n = 68, 30.22%), and hormone therapy (n = 60, 26.67%) (N_studies = 3). Eighteen participants (8%) had completed their cancer treatments less than four years before participating in the included study, while 12 participants (5.33%) had completed their cancer treatments more than four years before participating in the research (N_studies = 2). Post-treatment care length ranged between 4–36 months (M = 19 months), based on 13 participants (N_studies = 1).

Synthesized findings

Applying a meta-aggregative approach, 35 findings reported in the included studies were combined into 19 categories, which were then formed into three synthesized findings (overarching descriptions of the categorized findings) relating to the primary and secondary research aims (Table 2).

Table 2. Synthesized findings and component categories of experiences of cancer-related cognitive impairment among women diagnosed with breast cancer.

Experiences of Disclosing Cancer-Related Cognitive Impairment to Health Professionals: Women, often uninformed about cancer-related cognitive impairment before chemotherapy, were primarily the one’s to initiate conversations with their health professionals, which was challenging in the context of frequent changes in the healthcare team. Upon disclosure, women received mixed responses and limited support, which contributed to hesitancy to discuss symptoms, although some health professionals were supportive, leading to a positive doctor-patient relationship Women were not informed about cognitive impairment symptoms prior to chemotherapy treatment For women who received information before treatment, it was through nonspecific brochures/leaflets provided by cancer support groups or clinics Women were primarily the ones to initiate conversations that disclosed symptom experiences Limited support was offered after disclosure Health professionals’ responses after disclosure varied Lack of understanding or dismissal of symptoms Acknowledgement of symptoms but no follow-up or formal assessment For women who had frequent changes within the healthcare team it was harder to initiate conversations about symptoms Women perceived their concerns as trivial to doctors, contributing to hesitancy to discuss symptoms during appointments Positive experiences that women had with their healthcare team involved validation and understanding of symptoms, examples of self-management strategies and regularly checking on symptoms at follow-up appointments

Experiences of Cancer-Related Cognitive Impairment: Cancer-related cognitive impairment affects multiple areas of executive functioning, where symptoms, often noticed during chemotherapy, that impact sense of self, social interactions and relationships, lead to withdrawal and work-related challenges, become the highest health priority after cancer treatment Women experience symptoms in multiple areas of executive functioning Symptoms impact women’s sense of self, resulting in lower self-esteem and self-confidence Social interactions and relationships were significantly impacted for some women due to their symptoms. Social withdrawal and avoidance behaviors were common reactions for women adjusting to symptoms. Symptoms have potentially severe implications when returning to work post-treatment Most women tend to notice cognitive impairment during chemotherapy, but symptoms became a higher priority after cancer treatment had ended

Coping Strategies and Intervention Preferences: Women employed a range of self-management strategies which they learnt about from a range of sources, preferring not to use pharmacological treatment but noted that strategies can succumb to cognitive impairment symptoms, with some women resigned to perceived limitations and others wanting health professionals to be more involved in management. Women tended to rely on a range of self-management strategies to cope with symptoms Strategies can be helpful, but can also succumb to cognitive impairment symptoms Some women were resigned to perceived limitations A range of resources were utilized by women to form self-management strategies Women preferred to not engage in pharmacological treatment of symptoms When developing coping strategies, women suggested health professionals could be more involved in providing resources and monitoring

Experiences of disclosing cancer-related cognitive impairment to health professionals

The meta-synthesis of experiences of disclosing cancer-related cognitive impairment symptoms to health professionals was derived from eight studies that were grouped into six categories and three subcategories (Table 2) to provide the overall synthesized finding: ‘Women, often uninformed about cancer-related cognitive impairment before chemotherapy, were primarily the one’s to initiate conversations with their health professionals, which was challenging in the context of frequent changes in the healthcare team. Upon disclosure, women received mixed responses and limited support, which contributed to hesitancy to discuss symptoms, although some health professionals were supportive, leading to a positive doctor-patient relationship’.

Women commonly expressed receiving insufficient information and preparation for cancer-related cognitive impairment before treatment.^{22,24,26,39–41} No verbal information was reported to be provided by health professionals, with a minority of women receiving general information from brochures inside clinics or provided by breast cancer support groups.^24,26 The lack of information increased distress for women, as their symptoms led them to question their judgement.⁴⁰ Information regarding cancer-related cognitive impairment before treatment was expressed to be beneficial in assisting women in understanding and adjusting to cognitive changes, especially regarding returning to work.²⁴ It was also viewed as important for women to receive this information directly from their health professional: “[…] I wish that whether it’s a doctor or patient care coordinator… would talk to them [and say] ‘You know, you may not get it, but these are some of the things that happen…just be aware, so that you don’t get frightened that you are losing it or aren’t meeting everybody’s expectations’”^{22, p.227–228}.

Conversations disclosing cognitive impairment to health professionals were initiated by women rather than resulting from routine screening by the healthcare team during or after treatment.^26,41 Women who experienced frequent changes in their healthcare team (e.g. seeing a surgeon, oncologist and general practitioner in different locations), experienced greater difficulty forming trusting relationships with health professionals, which increased their reluctance to discuss cognitive impairment symptoms.⁴² One woman described a desire to continue having contact with Breast Care Nurses who were part of her healthcare team: “Breast Care Nurses were absolutely wonderful but I had no contact with them once I moved from surgeon to medical oncologist. I would have liked contact with them for the remainder of treatment.”^{39, p.1269}

Furthermore, health professionals often did not offer further assessment or treatment options after disclosure of cognitive impairment.^26,39,41,42 Generally, responses varied but were limited; some women were prescribed antidepressants and vitamins⁴¹ or referred to a psychiatrist.³⁹ However, no women were referred to allied health professionals, such as psychologists or occupational therapists, for further support.⁴²

Overall, most women did not receive adequate support for their cognitive impairment, which may have arisen from a perceived lack of understanding from health professionals. Women frequently reported experiencing frustration after their healthcare professional minimized their cognitive concerns,²⁶ attributed their symptoms to other factors, including other cancer symptoms,²⁶ or their age.²² In addition, some women experienced dismissal of their symptoms when they raised them with their healthcare team: “when I discussed it with my oncologist, he dismissed it as nonsense.”^{39, p.1269}

Women’s perceptions about their healthcare team’s reactions to their disclosure of cognitive impairment contributed to greater hesitancy to discuss symptoms for fear of damaging the doctor-patient relationship⁴⁰. Women reported feeling that their concerns were unimportant to their busy doctors, who were more focused on treating the physical symptoms of cancer,⁴² or that their concerns were exaggerated or unreasonable,⁴⁰ as described by one woman: “They don’t know what to do [to fix it]. More of an approach of solve the life/death and then mop up everything else afterwards”^{39, p.1269}

Some women reported positive experiences after disclosing cognitive impairment to health professionals. Validation of symptoms and reassurance that the cognitive changes were common were fundamental to a positive reaction from women after symptom disclosure.^26,41,42 Acknowledging and validating symptoms provided a sense of relief for women²⁶ and reassurance that other women commonly experienced similar symptoms.⁴¹ Also, women appreciated when health professionals accepted and valued their concerns about cognitive impairment symptoms: “I have to say that none of my doctors have taken any sort of cognitive or psychological or emotional issues lightly”^{39, p.1269}

Experiences of cancer-related cognitive impairment

The meta-synthesis of women’s experiences of cancer-related cognitive impairment was derived from seven studies that were grouped into six categories (Table 2) to provide the overall synthesized finding: ‘Cancer-related cognitive impairment affects multiple areas of executive functioning, where symptoms, often noticed during chemotherapy, that impact sense of self, social interactions and relationships, leading to withdrawal and work-related challenges, become the highest priority for health after cancer treatment’. This synthesized finding was developed during inductive analysis and is included as it provides important context that is beneficial in understanding the experiences of women who disclose cancer-related cognitive impairment symptoms to health professionals.

Women reported experiencing significant deficits in a range of executive functions, including attention and concentration, memory, language, processing speed and problem-solving.^{24,26,39,40,42,43} Common complaints included ‘going blank’,^39,40 lack of clear thinking or feeling ‘foggy’,^24,26 increased difficulty in multitasking and maintaining conversations with multiple people at once,^24,39 repeating oneself in conversation,³⁹ an inability to cope with stressful situations,⁴² difficulty learning new skills,³⁹ losing things,³⁹ and experiencing greater fatigue due to engaging in compensatory strategies.⁴²

Women experiencing cognitive impairment also commonly reported difficulties with verbal tasks and word recall.^22,26,39,42 Greater attention and concentration were required to understand reading material, making reading for enjoyment more difficult,^22,26 and women experienced greater difficulty completing paperwork and medical forms.⁴² Some women also experienced word recall difficulties, as described by one woman: “I will lose a word and not be able to come up with it for hours or sometimes days.”^{26, p.238}.

Some women reported experiencing cognitive impairment symptoms severe enough to interfere with daily living activities, including paying bills, remembering passwords or PINs, and grocery shopping.^{22,24,26,39,42} Additionally, women commonly reported difficulties with driving, including planning routes and coordinating driving movements.^22,26,39,42 The inability to concentrate while driving became dangerous in some situations, leading to driving avoidance, as one woman highlighted: “I was at an intersection and I just didn’t see it [the other car] …I decided that was enough for me”^{42, p.235}.

Cognitive impairment strongly impacted women’s sense of self, with some women describing feeling like they were no longer themselves:²⁶ “I’m just not the person I used to be and it gets very frustrating”^{26, p.239}. In addition, many other women reported feeling ‘frustrated’ by their symptoms,^{22,24,26,39,42} as they lost their role and identity,⁴² could not function at their previous pace,²⁴ and noticed a reduced ability to learn new things.²² Other common emotional reactions included feeling disheartened and disconcerted,²⁶ embarrassed,^26,42 and upset or fearful.^22,42 In addition, many women reported experiencing a loss of self-confidence and self-esteem^{22,24,26,39,42} and were overwhelmed by stressful situations,^24,39,42 as articulated by one woman: “…before treatment I used to have quite a high stress level, I can’t deal with too much stress anymore”^{24, p.1366}

Women expressed that their cognitive impairment significantly impacted their relationships with family and friends. Family and friends’ reactions to symptoms ranged from apathetic to supportive.²² Women who experienced adverse impacts reported that their family and friends were ‘confused’ by or misunderstood their symptoms^22,26 and that family members likened their symptoms to dementia: “I repeat myself many times and my husband says ‘Have you got Alzheimer’s?’”^{24, p.1366}. Women reported feeling disconnected from their families due to missing important events and family role changes.⁴² Some women experienced their friends feeling afraid for them when interacting at a time when their cognitive impairment symptoms were severe.²²

Cancer-related cognitive impairment also significantly impacted women’s employment. Some women reported being keen to return to work for a sense of normality and that their workplace was supportive, which helped to build confidence.²⁴ However, women reported that work tasks were often more difficult to perform²⁶ due to an inability to maintain concentration, multitask, or tolerate noise:²⁴ “I remember going back to work and thinking: ‘Oh I just want to get out of here, I can’t stand this, all the noise and everything”^{24, p.1367}. Some women’s cognitive impairment was such that they reduced their hours, changed work roles, left their jobs or retired early, significantly impacting their finances,^22,24,26 as one woman shared: “I went into retirement because of the cancer, simply because I could not maintain the level of work that I was used to…”^{22, p.229}. Some women were hesitant to discuss their cognitive impairment with their employers²⁴ and reported reduced confidence in handling work-related stress:^22,24,42,43 “I’m worried I’ll have to go down a grade at work, because I can’t keep up cognitively with the job I have at the moment”^{42, p.235}. Symptoms also impacted women seeking employment, who noted increased stress about participating in job interviews and finding suitable employment:^22,39 “I feel I can’t go out and look for other work because I don’t know how I would physically fit into a work environment because of looking utterly stupid. I’ve worked since I was 16 and now, I have to apply for unemployment benefits.”^{39, p.1268}

Women first noticed cognitive impairment during their chemotherapy; however, it was not a primary concern at that time: “… when I was receiving chemotherapy, I was so caught up in all of the other physical aspects of the chemo… that I didn’t pay particular attention to my memory function”^{26, p.238}. Cognitive impairment persisted for many women, lasting a year or longer,⁴³ with symptoms being inconsistent and unpredictable:⁴² “You know, I never felt like, neurologically, I really returned to my pre-cancer state. I kept thinking it would get better but it never did”^{40, p.E30}. As women’s symptoms lingered after chemotherapy ceased, they became increasingly concerned about their cognitive functioning and its impact on their lives: “…When I became concerned and noted it as something I perceived as a problem was when chemotherapy was over and I was physically feeling better and I felt like I was back in life, and then I just couldn’t do what I had done before, and I didn’t understand why.”^{26, p.238}.

Women’s coping strategies and intervention preferences

The meta-synthesis of women’s coping strategies and intervention preferences was derived from four studies that were grouped into six categories (Table 2) to provide the overall synthesized finding: ‘Women employed a range of self-management strategies which they learnt about from a range of sources, preferring not to use pharmacological treatment but noted that strategies can succumb to cognitive impairment symptoms, with some women resigned to perceived limitations and others wanting health professionals to be more involved in management’. This synthesized finding was generated during inductive analysis and is included as it provides important context that is useful in understanding the experiences of women who disclose cancer-related cognitive impairment symptoms to health professionals.

Women utilized a range of coping strategies to counteract cancer-related cognitive impairment. A combination of organizational and preventative strategies assisted with daily living tasks and routines, including using calendars, journals and lists to remember appointments and tasks,^22,42 post-it notes with reminders (e.g. to turn off the gas, lock the door),^22,42 or training oneself to place items in specific locations (e.g. placing keys by the front door).²² However, these common strategies sometimes became susceptible to cognitive impairment symptoms, so women received support from family, as one woman explained: “My husband calls me to remind me of the things I need to do”^{41, p.85}.

To challenge cognitive impairment symptoms, women frequently engaged in activities involving mental stimulation, such as completing puzzles, word-based or mathematical-based problem-solving activities, or computer-based brain training games.^22,41,42 In addition, some women utilized activities focusing on specific symptoms such as word recall: “I do word and name association-type activities so that I will be less likely to forget words and names”^{41, p.85}.

Women did not report receiving professional assistance from an allied health professional specifically for their cognitive impairment symptoms.⁴² They reported that they initiated activities themselves or that other women within breast cancer support groups,⁴² and occasionally their healthcare team,⁴¹ suggested activities.

Women used diverse coping strategies to alleviate emotions that coincided with cognitive impairment, including adjusting expectations of themselves, humor, and receiving support from family and friends.⁴¹ Women also received support from other women undergoing breast cancer treatment or attending cancer support groups.⁴² They described discussions with other women experiencing similar symptoms as positive and validating: “Knowing there are others out there that are struggling with this, it’s not good news, but it makes me feel better that I am not crazy. It validates that this is real.”^{41, p.85}.

Women articulated that they preferred not to receive pharmacological treatments for cognitive impairment symptoms, as summarized by one woman: “I am leery of taking any medication at this point.”^{41, p.86}. Women also highlighted that health professionals should be more involved in providing information about cancer-related cognitive impairment to women diagnosed with breast cancer and their families and employers,⁴³ and assist in developing and monitoring coping strategies at follow-up appointments.³⁹

Conclusions

We explored and synthesized the experiences of women with breast cancer disclosing cancer-related cognitive impairment symptoms to health professionals. We additionally reported women’s experiences of cancer-related cognitive impairment and their coping strategies and intervention preferences, as this information provides important context to aid in understanding women’s disclosure experiences. Consistent with previous findings, our review found that cognitive impairment affects multiple areas of executive functioning,^5–7 which subsequently impacts wellbeing and functioning.

Our findings suggest that women were primarily the initiators of discussion about cognitive impairment symptoms, consistent with previous research investigating health professionals’ perspectives in discussing and managing cancer-related cognitive impairment.^25,28 He et al.²⁸ explored symptom disclosure to health professionals of varying disciplines, with medical oncologists reporting that a minority of women disclosed symptoms and most clinical psychologists reporting that they did not receive referrals for cognitive impairment but that in their sessions, women reported cognitive impairment symptoms as a secondary concern. This finding from our review highlights that previously identified barriers to health professionals raising cancer-related cognitive impairment (i.e. lack of clarity about the proposed mechanisms underlying cognitive impairment, lack of clinical practice guidelines, financial constraints and limited time during follow-up appointments ^28,29) should be addressed to support women experiencing cognitive impairment symptoms, as women have reported wanting health professionals to be more involved in cognitive impairment assessment and management.^39,43

Our review also highlighted that the lack of information before treatment increased distress for women experiencing symptoms, with many women questioning their judgement.⁴⁰ Information delivered by a health professional before treatment was viewed by women as an important step in preparing and adjusting to cognitive changes after treatment.^22,24 While there are currently no clinical management guidelines for cancer-related cognitive impairment, women viewed validation of symptoms from their health professionals as very important.^26,41,42 Women also described employing a range of coping strategies, such as organizational strategies (e.g. calendars, note taking, establishing routines), symptom-specific strategies (e.g. word games or puzzles), and using social support to cope with emotions,^22,41,42 that health professionals could suggest to other women.²⁴ Health professionals may also be involved in monitoring coping strategies, as findings highlighted that common coping strategies can also be susceptible to cognitive impairment symptoms.⁴²

Additionally, our findings, synonymous with earlier findings,^9,23,25,27 highlighted the significant impact cognitive impairment symptoms can have on women’s sense of self, social relationships and difficulties associated with returning to work. Frustration arose when women encountered greater difficulty completing daily living tasks (i.e. reading, driving or paying bills) and working, leading to increased work-related stress.^24,42,43 Cognitive impairment further contributed to working reduced hours, changing roles, or retirement for some women, and was consistent with previous findings.²⁷ Our review highlighted the diverse presentation of symptoms that women with cognitive impairment experience and that women can experience significant psychological, social and employment impacts. Given these findings, health professionals should explore these impacts further after disclosure of cognitive impairment symptoms to determine symptom severity and provide guidance on managing such symptoms.

Overall, our findings demonstrated the importance of health professionals being proactive in discussing cancer-related cognitive impairment symptoms before treatment, facilitating and validating symptom disclosure, and following up on symptom experiences during appointments if symptoms are disclosed. Our findings also highlight the importance of health professionals being involved in the ongoing management of symptoms, which may include encouraging self-management by sharing information about common coping strategies and evaluating their success during follow-up.

Limitations

Rigorous research methods were used; however, our review is limited by containing a relatively small number of included studies, published in English, that only explored women diagnosed with breast cancer’s experiences disclosing cancer-related cognitive impairment symptoms to health professionals as well as their experiences of cancer-related cognitive impairment and coping strategies and intervention preferences. Therefore, our review does not consider the views of men or people of other genders with breast cancer; future research should explore their experiences. Our review also does not consider the views of women with breast cancer and cancer-related cognitive impairment who may have participated in research published in other languages or the perspectives of individuals with other cancers in which cancer-related cognitive impairment has been reported, such as colorectal cancer⁴⁴ and lung cancer.⁴⁵

Additionally, the included studies were conducted in high-income countries, and their samples comprised adult women who were primarily ‘Caucasian’, meaning gaps remain in knowledge about cognitive impairment in women with breast cancer from lower socio-economic groups and diverse cultural backgrounds. The authors of the included studies also did not report symptom duration or explore changes in symptoms over time, so it is unknown whether women were recalling current or past symptoms and their impacts. Also, recruitment for the included studies was primarily through support groups or cancer support charities, meaning participants’ experiences may not be representative of all women with breast cancer who experience cancer-related cognitive impairment. Finally, to capture all relevant studies, we did not limit the year of publication in our inclusion criteria; as the included studies were published between 2009 and 2018, and awareness of cancer-related cognitive impairment may have changed over time, the reviewed research may not reflect women’s current experiences when disclosing their cancer-related cognitive impairment symptoms to health professionals nor health professionals’ current practices.

Clinical implications for psychosocial oncology

Our review contributes to the growing literature exploring cancer survivorship and the impacts of cognitive impairment symptoms on post-cancer quality of life. The synthesized findings provide valuable information for health professionals working with women diagnosed with breast cancer about the impact of cancer-related cognitive impairment, with Table 3 summarizing recommendations for practice. In the absence of formal clinical guidelines for assessing and managing cognitive impairment, the evidence-informed recommendations for practice provided in this article aim to assist health professionals in supporting women with breast cancer experiencing cognitive impairment. Future research should continue to investigate methods to assess the presence and severity of cognitive impairment symptoms and explore strategies to manage symptoms and reduce distress.

Table 3. Recommendations for practice.

Health professionals should ensure they maintain up-to-date knowledge about cancer-related cognitive impairment, including prevalence, symptom presentation and effective management strategies Provide information before treatment commencement, as part of seeking informed consent, to women about the potential for cancer-related cognitive impairment symptoms Develop a strong, empathetic, collaborative relationship throughout treatment to create a safe space to discuss cancer-related cognitive impairment symptoms When supporting people with cancer, consider proactively asking about cancer-related cognitive impairment symptoms as part of standard care Provide validation and emotional support after cancer-related cognitive impairment symptom disclosure, especially if women are distressed by their experiences Routinely and thoroughly investigate cancer-related cognitive impairment symptoms after disclosure has been made Consider providing information/support/basic coping strategies where appropriate, as opposed to using pharmacological interventions for cognitive impairment symptoms Consider referral to an allied health professional (e.g. occupational therapist, psychologist) for women experiencing significant distress or difficulty adjusting to cognitive impairment symptoms Provide information/resources to family, carers and employers to enable increased awareness and support for women in multiple environments Regularly follow up on the use of coping strategies during post-treatment appointments Consider cognitive impairment symptoms as separate from ageing/other factors

Acknowledgements

The author/s would like to acknowledge Research Librarian, Ms Vikki Langton, for her assistance with the search strategy. No funding was received for the conduct of this research.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.