The main goal of this study was to identify whether there were any trends in emotional functioning and psychosocial wellbeing in breast cancer survivors over time. The results showed that psychosocial wellbeing of our sample decreased over a period of one year. Hence, psychosocial wellbeing partly followed the pattern that is in line with findings for the first year in other studies [7, 8]. However, emotional functioning followed a different trend as it increased with time. Thus far, emotional functioning and psychosocial wellbeing have been grouped together and most studies on post-traumatic stress in breast cancer survivors have considered them to be very closely related [5, 6, 27, 28]. However, the diversification that was found in the trends between emotional functioning and psychosocial wellbeing in this study, as measured by common instruments like EORTC-QLQ-C30 and BREAST-Q, suggests that they may better be considered as separate outcomes.
The differences between the trajectories of emotional functioning and psychosocial wellbeing can be explained by looking closely at the differences between the emotional functioning subscale of EORTC-QLQ-C30 and the psychosocial wellbeing subscale of BREAST-Q. The emotional functioning subscale measures the general determinants of negative mood, such as anxiety, irritability, and depression , whereas the questions for psychosocial wellbeing are more specific and correspond to perceptions of self-worth and self-confidence, which are phrased with respect to the breasts .
A cancer diagnosis is marked by fears and uncertainty about treatment, stress, anger and depressive symptoms . This could explain why the emotional functioning in this study was the lowest at baseline and consistently increased with time thereafter, a finding also reported by studies investigating different types of cancer patients [6, 9–11]. By contrast, the psychosocial wellbeing was the highest at T0. Considering that this measurement was taken before the participants had undergone any breast surgery, it might explain why psychosocial wellbeing with respect to their breasts is highest preoperatively [23–25]. The trajectory showed a dip in psychosocial wellbeing at 6 months after surgery, which persisted till one year postoperatively. This is in line with findings about the pretreatment phase [6–10], which is said to cause disruption to one’s self-concept. Incorporating cancer into one’s life and self-concept is a dynamic process of maintaining mental wellbeing and this data suggests that this process might take more than a year to accomplish.
Furthermore, it was found that the reconstruction group had both the highest increase in emotional functioning and an insignificant decline in psychosocial wellbeing between baseline and a year after surgery. This is in contrast to the findings from other studies, which found that women who receive breast reconstruction have more mood disturbances and distress than those who undergo mastectomy, up to twelve months after baseline [6, 12, 30–32]. Perhaps, the difference between previous research and the current study’s findings can be accounted for by differences in practices regarding patient-centered care. Having unrealistic expectations about the outcomes of breast reconstruction can drastically reduce the emotional wellbeing of patients after surgery [33, 34]. However, over the past years, efforts have been undertaken to improve patient education by discussing these expectations extensively in the preoperative phase in our center, which may suggest that adequate patient-centered care moderates the influence of surgery on patient wellbeing [31, 32]. It was also found that women with no partner or children showed the most significant decline in psychosocial wellbeing and stable levels of emotional functioning. These findings corroborate with previous studies that highlight the importance of social support in the navigation and management of different phases of the cancer journey [7, 11–13].
The strength of this study lies in its prospective character. Past studies were retrospective in nature and collected data by asking the participants to look back on their journey, thereby confounding the results with recall bias [4, 9, 11]. Another important strength is the collection of baseline PROMs .
A shortcoming of this study is the inconsistency in questionnaire administration. Because the BREAST-Q was not administered at T24, in order to understand how psychosocial wellbeing changed after a year, the trajectory had to be modeled (see Appendix B). Data quality and value of these findings could have been enhanced when both questionnaires had been administered at the same time-points. Another limitation of the present study is that we did not control for whether women underwent systemic treatment. Systematic treatment may have an influence on the emotional and psychological outcomes of the patients. Therefore, it is recommended that future research includes this factor when exploring emotional functioning and psychosocial wellbeing in breast cancer survivors.
Clinical Implications and Conclusion
This study highlights the need for alertness on emotional and psychosocial problems in certain groups, particularly from diagnosis to the first 10–12 months. The diagnosis phase is the starting point of the cancer journey and is marked by distress associated with high levels of uncertainty [6–10], so the role of the professional here is to pay attention to the increased survival rates and the overall good treatment outcomes in terms of quality of life [2, 35]. One of the most significant decisions the patient makes in this phase concerns the type of surgery . Hence, supportive care should facilitate an open dialogue between the patient and the professional about her preferences, expectations and the level of freewill in selecting a type of surgery . While most women in this sample underwent breast-conserving therapy, reflecting national data, this option is not feasible for some patients for example in large, multicentric carcinoma, DCIS, or after previous radiation treatment . If that is the case, and patients would have preferred this treatment option, patients should be given space and enough time to express disappointments, ask questions about other possibilities and process any loss of control. Breast reconstruction, on the other hand, is often a product of choice [12, 30–34]. However, the experience of women undergoing reconstruction may vastly differ based on the timing of reconstruction after mastectomy, type of reconstruction, and the occurrence of surgery-related complications [6, 12, 30, 31, 34]. Hence, apart from expectations, these factors must also be discussed in depth before a decision is made.
One of the most significant findings in this paper is the realization that emotional functioning and psychosocial wellbeing are not the same in breast cancer survivors. Especially, during the crucial time points of 6 months and a year after their surgery, their scores on PROMs should be screened carefully to identify significant deviations from baseline. In doing so, it is important to keep in mind that emotional functioning and psychosocial wellbeing are not necessarily (entirely) related to breast cancer treatment. It may be that there are other important life events affecting the patients’ wellbeing .
In addressing deviations or high scores, it is important to have an open attitude and not refrain from asking how patients feel. Even though there may be adverse emotions related to breast cancer treatment, this is not a reason not to address it during the consultation. In fact, patients may benefit from an open and understanding conversation with their physician on their treatment outcome , especially if the patient perceives the outcome as disappointing [37, 38]. Physicians may be afraid that asking about mental health and wellbeing would elicit a strong, unpredictable reaction that may be hard to control or time-consuming, but this fear turns out to be unfounded. Several studies have shown that patients highly appreciate an empathetic understanding from their doctor [36–39]. Moreover, it appears that such small gestures do add to their wellbeing and their treatment evaluation [36, 38, 39]. For patients for whom a conversation with the physician does not seem enough to address possible mental health issues, the physician may discuss referral to mental health team available in the hospital. Even then, it is advised that the physician inquiries about a patient´s wellbeing in the first place because otherwise a mental health problem, for which evidence-based treatment exists and is indicated, could have been missed. Therefore, a discussion of PROM scores offers the opportunity to further improve the quality of care.