Breast cancer is the most common cancer site in women in all countries of Europe (Ferlay et al, 2018). Treatment may include surgery, therapies (eg radiation, chemotherapy, hormonal) and drug trial treatment, or a combination of these (World Health Organization, 2007). Improvements in survival rates also relate to advances in prevention and early detection (Youlden et al, 2012; Plevritis et al, 2018). Some women diagnosed with breast cancer can experience substantial physical and psychological pain even before their treatment begins; furthermore evidence suggests that pre-existing anxiety and depression can influence the degree of physical pain experienced (Galloway et al, 2012; Johannsen et al, 2017).
Diagnosis-related depression and anxiety can also impact recovery in the biological, social, psychological and emotional domains. Because depression and/or anxiety are common in the 12 months following a diagnosis of breast cancer there is a need for psychological clinical interventions in breast cancer care (Burgess et al, 2005; Kelly et al, 2018). The impact of psychological sequelae following diagnosis includes a poorer prognosis, poor satisfaction with life and poor health-related quality of life (QoL), and subsequent poor personal adjustment or resilience. Depression can manifest as symptoms such as poor sleep, poor appetite and lowered activity levels (Fiorentino et al, 2011). There is evidence to suggest that younger women suffer more psychological distress compared with older women with breast cancer, having implications for QoL, recovery, survival and use of clinical services (Avis et al, 2012).
The breasts are an integral aspect of a woman's self-image, encompassing femininity and identity, therefore treatment that involves the removal of breasts can negatively impact psychological wellbeing, including body image and personal resilience (Dell et al, 2008; Hill and White, 2008; Hughes et al, 2011; Henderson et al, 2012). The concept of resilience has different meanings in different contexts, and in health care ‘being resilient’ can refer to an individual's ability to bounce back or readily recover from ill health, and involves self-righting capabilities (Edward et al, 2009). Although contemporary healthcare practice is primarily concerned with symptom reduction, a shift towards working with people's strengths and promoting individual self-righting abilities is worthy of further consideration (Edward, 2014).
The knowledge gap
Systematic reviews of the psychosocial implications (Foster et al, 2009) and QoL for long-term survivors (over 5 years) of breast cancer (Mols et al, 2005) have been undertaken reporting good QoL but with specific physical problems (sexual problems and lymphoedema). No systematic review could be located examining QoL and personal resilience for women with breast cancer up to 2 years following diagnosis with or without adjuvant therapy during the intervention period. Given that in the first 2 years after a cancer diagnosis individuals report feelings of anxiety, fear and increased stress of facing mortality while experiencing effects of treatment, further insight into this early period after diagnosis was warranted.
The aim of this review was to examine what improves QoL and personal resilience of women following a diagnosis of breast cancer (up to 2 years following diagnosis). The research question guiding the review was: ‘What improves QoL and personal resilience for women diagnosed with breast cancer (≤2 years post diagnosis) with or without adjuvant therapy (ie chemotherapy, radiotherapy, hormone therapy, monoclonal antibody therapy)?’
The potential benefits of the findings of this review were determined to be providing information for clinical interventions in the first 2 years following a breast cancer diagnosis to improve QoL and personal resilience. This is important, since the cornerstone of clinical interventions is working with people's strengths and at present little is known about these in the context of the early period following a diagnosis of breast cancer.
Methods
Search strategy
The databases of Medline, CINAHL, Cochrane, and Psychology and Behavioral Science Collection were searched using the search strings identified in Box 1. There was no beginning date parameter used in this search. Manuscripts published up to February 2019 were included in this review.
The following inclusion criteria were applied to articles: women who were diagnosed and have survived breast cancer (≤2 years after diagnosis) with or without adjuvant therapy (ie chemotherapy, radiotherapy, hormone therapy, monoclonal antibody therapy) during the intervention period.
Additionally, the articles of interest were included only if they reported research, written in English and had been peer reviewed. To be included a study must have reported, at a minimum, one of the following outcome measures: QoL, depression and anxiety, resilience, wellbeing and mental health.
Extraction and quality appraisal
To assess the quality of the research included in the review the studies were examined by three researchers. Findings from both quantitative and qualitative research studies were included. Two of the researchers (KE and MC) used an extraction tool based on the Critical Appraisal Skills Programme (CASP) checklists (CASP, 2018). Methodological quality of each of the selected quantitative studies was based on a modification of the Grading of Recommendations Assessment, Development and Evaluations (GRADE) Working Group guidelines (Atkins et al, 2004). Two studies were assessed as high GRADE. Due to the paucity of high GRADE research returned low GRADE quantitative research studies were also included. Qualitative studies were assessed by discussion between reviewers (KE, MC and JG) related to methodological rigour, including theoretical framework. The Preferred Reporting Items for Systematic Reviews and Metal-Analyses (PRISMA) flowchart was used to provide transparency related to reporting of the screening and selection of articles (Liberati et al, 2009) (Figure 1).
Data analysis
Analysis of the systematic integrative review was undertaken using qualitative research methods, whereby a thematic analysis was undertaken. Data were synthesised by three authors (KE, MC and JG).
Results of search
A total of 501 abstracts were screened, of which 73 articles were selected for full text read. Of these articles, 37 were excluded (see Figure 1), leaving 36 articles included in the review (see Box 2). The 36 articles comprised 29 quantitative research studies and 7 qualitative studies with a combined sample n=7768. Studies undertaken represented multiple country settings, with 19 studies based in the USA, 3 in Australia, 2 each from Canada, China and Malaysia, and 1 each from the UK, Germany, Netherlands, Sweden, Switzerland, Brazil, Israel and Singapore.
Themes and discussion
The main emergent themes of this systematic integrative review included ‘implications of age’,‘benefits of psychosocial support’, ‘stress management, self-management and optimism’ and ‘breast cancer self-management education’.
Implications of age
The age-related impacts of living with breast cancer were evident in the returned literature. Cordova et al (1995) identified a common risk for breast cancer survivors of experiencing post-traumatic stress disorder (PTSD) symptoms. As predicted and consistent with previous research (Vinokur et al, 1990), they found that younger women were more at risk of experiencing adjustment problems, with implications for their personal resilience. Although this study was neither longitudinal nor prognostic, screening for PTSD symptoms in the clinical context may be beneficial for adjustment issues that may arise, mental health problems and/or poor QoL in the longer term. In an earlier study, Vinokur et al (1990) found that adjustment was closely related to age, the stage of disease at diagnosis and the extent of the physical impairments after cancer treatment. Their findings indicated that younger women (<60 years) with advanced cancer and severe physical impairments experienced profound psychological impairment compared with older women (>60 years) with similar physical impairment post treatment. However, this study was not a longitudinal study either so the longer term impacts on mental health were not determined.
In the months immediately following treatment, clinical evidence suggests that women can experience distress related to the life changes during post-diagnosis adjustment. Costanzo et al (2007), who investigated personal adjustment and adaptation, found evidence to suggest younger women were more vulnerable to adaptation and resilience impediments and suffered psychologically compared with their older peers. The results of this study need to be taken into consideration in light of its limitations related to study design (cross-sectional survey) and small sample. Nevertheless, the results of these studies do provide an insight into the presence of cancer-related anxiety and the possible ongoing significant concerns that impact on QoL. The enhancement of personal resilience may offer women an avenue to find a ‘new kind of normal’. The authors here suggest the focus of care in the post-surgical phase should be related to assisting women to navigate the challenges of a diagnosis and the discovery of a new normal.
The diagnosis and treatment effects of breast cancer can extend beyond the acute phase of treatment for some women, particularly younger women with regard to menopausal symptoms. A study by Ganz et al (1998) investigated sexual functioning in women with breast cancer. This was comparable to healthy women, but those with breast cancer reported having more physical and menopausal symptoms than healthy comparisons. However the Ganz et al (1998) study was not designed to illuminate the more subtle interactions related to the menopausal state and breast cancer in their sample—in addition, culturally appropriate clinical interactions require further examination.
Avis et al (2005) found that, with increasing age, statistically significant results were obtained for physical symptoms such as hot flashes (P=0.0007), painful intercourse (P=0.02) and difficulty with bladder control (P=0.002) after surgery. Younger breast cancer survivors in this sample were at risk for impaired QoL and adjustment concerns including psychosocial support up to several years after diagnosis. However, socially relevant activities of daily living such as preparedness to work or activities of employment at the time of diagnosis were questions asked retrospectively. This required participants to rely on their memory of these events, introducing risk of poor recall. Phillips et al (2008) also found that psychosocial factors, including greater anxious preoccupation, were associated with a younger age (<60 years) at diagnosis (P=0.03), a higher tumour grade (P=0.02) and wider disease spread (P=0.008). However, no repeated evaluations of psychosocial factors over time were undertaken. Preparing younger women to expect issues such as menopausal symptoms, impacting sexual relationships and functioning (potentially including body image) can be incorporated in the post-acute phase following treatment and beyond.
The benefits of psychosocial support
Psychosocial support for women experiencing breast cancer was a primary outcome of interest in just a few studies returned in this review. Waters et al (2013) found worry and lower social support were associated with poorer QoL. This study however, only included women over the age of 40 years and the results cannot be generalised to younger women. The spread of breast cancer (the focus of this sample, ie ductal carcinoma in situ or early invasive breast cancer) precludes the results being transferable to women with more advanced forms of cancer. The women in this study being early-stage cancer survivors may have also impacted the level of worry reported by participants (with 70% reporting no worry at all), suggesting the sample may be healthier than perhaps women with more advanced cancer. Owen et al (2005) found that online support and coping groups were beneficial, especially for women with poorer self-perceived health status who showed the greatest improvement over time. Improvements over time were associated with greater ‘venting’ of feelings, greater efforts to cognitively process the cancer experience and less expression of somatic and treatment-related concerns. However, the results of the study need to be considered in the context of it being a pilot study with a small sample size (n=62).
Although some research suggests talking to others, and social supports act as moderators of depression and poor QoL, a cultural context must be kept in mind. Lee et al (2013), although their study was culturally biased (ie Asian women participants), found that women from particular cultural backgrounds were less likely to discuss issues with their family and friends due to wanting to maintain privacy or not being willing to burden a significant other. In this context, social support may be considered in the background of culture, such as support programmes developed for specific cultural minorities with native languages and support from women of the same cultural background. Consideration of cultural context and facilitating psychosocial support may assist with illness interpretation and adaptive coping and perhaps lead to optimistic views and better QoL.
Stress management, self-management and resilience
Optimism is linked to adaptive coping, better QoL and possibly even resilient behaviours. Büssing and Fischer (2009) showed that over 52% of individuals with cancer viewed their disease as a challenge while others regarded their disease as ‘value adding’ (strengthening their resilience and character)(38%). In this study few of the group regarded their cancer as a punishment (3%). Their results suggest negative views predicted poorer QoL while positive interpretations correlated with adaptive coping for individuals. It was noted that the study sample consisted of cancer survivors generally, rather than women during the earliest phases of breast cancer specifically, and therefore may not be transferable to the acute phase context.
However, optimistic actions are witnessed in resilient individuals. Loprinzi et al (2011) investigated QoL, resilience, stress and anxiety in a group of Pink Ribbon mentors (recent cancer survivors) undergoing a SMART [Stress Management and Resilience Training] programme. This was the only article in this review that investigated resilience specifically; the results were encouraging, with significant improvements seen in resilience scores (P=0.01), QoL (P=0.002), decreased anxiety (P=0.02) and reduced stress (P=0.003). Although the participants of this study were mentors and results may be confounded by their past experiences and motivation levels, these findings indicated that resilience can be improved through training. The limitations of the study were that it was a pilot study with a small sample sizes (n=20).
Interventions that address psychological symptoms of stress and distress following diagnosis and/or treatment can be creative and cost effective. Freeman et al (2008) found the practice of imagery and relaxation could improve QoL for women with breast cancer, highlighting the importance of post-surgical management of psychological stress, which includes self-management activities. However, as with all qualitative research, the findings can not be generalised. Bødtcher et al. (2015) focused on fatigue in breast cancer survivors (n=365) and found pre-existing anxiety and/or low physical activity resulted in greater levels of post-treatment fatigue. Similarly, Levkovich et al (2015) (n=95) and Moreno et al (2018) (n= 64) found positive associations between fatigue and depression (with or without anxiety) and the subsequent impact on QoL. Saboonchi et al (2015) examined the trajectory of anxiety and adjustment within the first 2 years following breast cancer surgery (n=725); they suggested that changes over time in anxiety levels in the early stages of breast cancer treatment and recovery reflect the person's adjustment (or lack of adjustment).
Hoffman et al (2012) found that self-management interventions improved wellbeing and QoL over time. Of the 229 women in their study with stage 0–III breast cancer, 85% had an early-stage diagnosis (stage 0 to stage II). There is a potential bias with fewer women with stage III breast cancer joining the study, and the findings are therefore limited in making conclusions for women with a more advanced cancer diagnosis. However, education targeting enhancement of self-management, self-efficacy and stress reduction offer promise in regards to maintaining good QoL and mental wellbeing in these women. Likewise, Lengacher et al (2009) found that a mindfulness-based stress reduction-programme designed to self-regulate arousal to stress had a statistically significant reduction in depression scores, anxiety and fear (P<0.05) and improvement in QoL and physical functioning. The limitations of the study related to access to such a programme for more severely distressed women and the small sample size restricts generalisability.
Mind–body wellbeing including stress management was also the focus of a study by Kinney et al (2003) who introduced a mind–body–spirit self-empowerment programme. The programme was a modified version of one originally developed and tested with people with multiple sclerosis but modified later for various types of cancer by Rodgers et al (1997). The outcomes of interest were depression, QoL, spiritual wellbeing and wellness, where statistically significant (P<0.01) improvements across all outcomes were found. The results need to be considered in the context that the participants who enrolled into this programme may have had an increased desire to improve their wellbeing and the self-reported data may reflect this point. Survivorship programmes should also be accessible to these women as revealed by Chan et al (2017) who found, in a trial of one such programme adapted for local women (n=72) in Singapore, that a reduction of distress and improved QoL resulted.
Self-management was the focus of other studies, for example, Gaston-Johansson et al (2013) and Chan et al (2017) examined the effectiveness of self-management multimodal coping and survivorship programmes. In the Gaston-Johansson et al (2013) study, the women in the intervention group showed significant improvement in overall QoL (P<0.01), health and functioning (P<0.05) and socioeconomic and psychological functioning (P<0.01).
Similarly the results of the Chan et al (2017) study revealed improvements, with a reduction in distress (P=0.01) and fatigue (P=0.04). Likewise, Loh et al (2011) found women with breast cancer who were taught self-management strategies had significantly (P<0.05) improved confidence in living with breast cancer. The findings also revealed changes in anxiety over time. Although this was a pilot, the results of the Loh et al (2011) study were encouraging in terms of the positive impacts from psychosocial interventions in women with breast cancer after diagnosis. In addition, Loh et al (2013) found that a 4-week self-management programme enhanced QoL (CI=1.37-5.42, P=0.001) and self-management. Since the clinical trial was not a randomised study, and given the potential for the introduction of bias, it is suggested that more rigorous research related to self-management in daily living for women with breast cancer is required, particularly in developing countries.
Improvements to knowledge in any format can positively influence the negative psychological sequelae experienced by women with breast cancer. Beatty et al (2010) evaluated the impact of a self-help workbook (‘Finding Your Way’) versus a booklet on psychological impacts for women with breast cancer. Those in the workbook group reported lower levels of PTSD, helplessness and avoidance. The small sample size impacts generalisability of the findings but the study provides important preliminary results. Reduced helplessness and reduced avoidance by women after support and education including self-management are all markers of resilience (Edward, 2013). Multimodal methods for delivering self-help education to women with breast cancer are required since this study only provided one mode of delivery (ie workbook), limiting accessibility of self-help education.
Breast cancer self-management education
Qualitative research indicated that the major concerns for women with breast cancer were related to fear of death, loss of pre-morbid self, guilt connected with the inability to return to work or pre-morbid state, concerns about sexuality, cognitive changes and fatigue (Nissen et al, 2002; Degner et al, 2003; Rosedale and Fu, 2010). Degner et al (2003) targeted women within 6 months of their diagnosis; most women reported that they perceived having breast cancer as a challenge (57%) or added value (28%), with few reporting that they perceived it as an enemy (8%). Pain, loss and fatigue were also central concerns expressed where Rosedale and Fu (2010) reported participants experienced distress associated with the loss of their pre-morbid self. A persistent fear of death and related anxiety were also indicated in the findings of a study undertaken by Nissen et al (2002). Similarly, fear was a central theme revealed by da Silva and dos Santos (2010).
A key message from these studies relates to assisting with post-traumatic growth through having meaningful discussions with women with breast cancer about life impacts after diagnosis and treatment. Although these studies are qualitative in nature and therefore it is not possible to form generalisations, the findings offer rich insight into the realities and challenges of this traumatic experience that women face during the early period after diagnosis of breast cancer.
Post-traumatic growth (that is, positive changes that occur as a result of coping with a traumatic event) can offer a means of transcending the negative impacts of breast cancer diagnosis and treatment. This was demonstrated by Sadler-Gerhardt et al (2010) in a phenomenological study of 8 women aged between 20 years and 80 years in exploring their stories of change and meaning as breast cancer survivors. In their study, post-traumatic growth emerged as a means of arriving at a new normal following diagnosis. Post-traumatic growth was referred to in their study as being confirmed by descriptions of varying degrees of positive psychological growth following diagnosis. Understanding this phenomenon in more detail holds implications for clinical intervention to help women transition through this adjustment period.
The first 2 years after diagnosis appear to be a critical time for women with breast cancer with regard to psychosocial impacts and the manifestation of mood disorders. Khan et al (2012) found that in a 3-year period approximately 30% of breast cancer cases reported a negative impact on psychological wellbeing. Similarly, Chen et al (2009) revealed that 26% women had mild to severe depression, while 13% fulfilled the criteria for clinical depression at 18 months after diagnosis. Not surprisingly depression was more common in women who lived alone than in married women. Likewise, Ploos van Amstel et al (2013) found that 36% of women expressed more distress in the first 2 years after surgery. Over half of their respondents (57%) experienced fatigue and 69% requested referral for professional psychological support.
Early distress can predict longitudinal outcomes, for example, Lam et al (2012) found distress at 8 months predicted psychosocial outcomes at 6 years and identified those who had low levels of distress at 8 months as resilient individuals; however they did not assess distress pre-diagnosis. In addition, longer-term interventions (such as counselling) to manage psychological functioning is required. Counselling can offer a means to mediate associated depression and anxiety. Marcus et al (2010) found telephone counselling produced a statistically significant improvement in depression (P=0.0007) and distress (P=0.007), reflecting a 50% reduction. The study had a number of limitations including the design, which did not allow for separate assessments of intervention efficacy, ie telephone versus the printed material. By the same token Cordova et al (2001) found talking to others was a moderator of mood disorders. Boquiren et al (2013) suggested that psycho-education could improve women's insight into their health beliefs, health goals and subsequent self-management.
Implications for practice
It is clear from this systematic integrative review that women suffer psychologically after a diagnosis of breast cancer (especially in the first 2 years). It was evident that any intervention focusing on positive aspects of ongoing life assists in a positive psychological recovery. Those identified in the findings as being at particular risk were: younger women, women with more advanced disease at first presentation, those who lack natural optimism (possibly indicating pre-morbid mental health disorder or lack of personal resilience), those with a previous mental illness, and those who lived alone with few psychosocial supports.
Working with women in the early stages post diagnosis and treatment may be key to enhancing resilience as a means of positive and functional adaptation. Building personal resilience through clinical interactions as described in previous resilience literature offers a means to assist the woman to resist depression and other mental illness (Edward, 2005; 2013; Edward and Warelow, 2005; Earvolino-Ramirez, 2007; Edward et al, 2009). Interventions that promote resilience and specifically target QoL are not routinely offered to women with breast cancer in the early treatment phase. These types of interventions—including self-management training, involvement in social support activities (including those offered in virtual environments), assessment of resilient qualities and shared planning—related to potential crises that may occur, and linkage to appropriate services in a timely manner can further offer improvements to QoL, mental wellbeing and resilience.
Limitations
The limitations of this review include the level of evidence of the returned papers (only two were graded as high level), highlighting that higher grade of evidence is required in this research area. In addition, the studies reviewed reflected small sample sizes, often not accounting for the age, race, social status, and previous mental status, stage of disease or extent of treatment required, thus limiting the possibility of generalising the findings to all populations. However, the findings can inform clinicians of the benefits of actively assisting women, especially in the first 2 years following diagnosis, in finding a new normal, a time frame that has not been previously reviewed.
Conclusion
This systematic review considered QoL and resilience for women who had recently been diagnosed and survived breast cancer. Since survivorship of women with breast cancer has improved, early and tailored interventions offer a means of improving QoL and potentially enhancing resilient coping for these women. In addition, building resilience when working with this patient group offers a foundation to enable self-management behaviours.
The findings of this review highlight that only one study has examined the notion of resilience for women with breast cancer, indicating that there is a significant gap in the evidence base. Given the importance of working with people's strengths during their healthcare experience, more evidence is required to inform clinical practice.