
==== Front
Breast
Breast
The Breast : Official Journal of the European Society of Mastology
0960-9776
1532-3080
Elsevier

S0960-9776(24)00116-4
10.1016/j.breast.2024.103785
103785
Short Communication
“Perspective: An integrated vision of the quality of life in breast cancer survivorship trajectory”
Marzorati Chiara chiara.marzorati@ieo.it
ab⁎
Masiero Marianna ab
Pravettoni Gabriella ab
a Department of Oncology and Hemato-Oncology, University of Milan, Milan, Italy
b Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology IRCCS, Milan, Italy
⁎ Corresponding author. chiara.marzorati@ieo.it
16 8 2024
10 2024
16 8 2024
77 10378528 5 2024
12 7 2024
5 8 2024
© 2024 The Authors
2024
https://creativecommons.org/licenses/by-nc-nd/4.0/ This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
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pmc1 Cancer survivorship and different trajectories

The amount of cancer survivors has greatly increased in the last years, and it will reach around 20 million by 2026 in USA Girgis, 2020 [1]. Considering only the US context, the number of breast cancer survivors (BCs) is around 3.8 million Cathcart-Rake & Ruddy, 2023 [2]. This crucial attainment in cancer care was achievable due to progress in screening, early diagnosis, and treatment advancements. However, these health goals are accompanied by a series of clinical, psychological, social, and organizational challenges associated with survivorship and quality of life (QoL) that have to be considered, as emphasized by the international recommendations Vaz-Luis et al., 2022a [3]. The scientific community agrees to define cancer as a chronic condition in which survivors experience a multitude of late effects that go beyond the end of treatments Girgis, 2020. Cancer survivorship is a complex, polyhedric, and uncertain trajectory that starts immediately after the diagnosis and follows until the permanent phase some years from the end of the treatments [4,5]. This definition also encompasses patients with advanced and metastatic cancer currently undergoing treatment [6]. A meta-analysis on this specific matter highlighted that cancer survivors have a severe compromising of the QoL at different levels (physical, social, and psychological) [7]. Firkins and colleagues (2020) highlighted that cancer survivorship is notably affected from 2 to 26 years after a cancer diagnosis regardless of cancer type, age, country of origin, and time from diagnosis [7].

Focusing on the specific conditions of BCs, accruing evidence reported that their survivor trajectory deals with several physical and psychological consequences of the disease and its treatments (both in the short and long term), as well as social and financial burden due to the impossibility of renewing employment and social roles. Although breast cancer care frequently offers cutting-edge biomedical interventions, it fails to address the broader psychosocial and QoL issues linked with survivorship [8]. A prospective cohort study by Rosenberg and colleagues (2020) found that QoL trajectory worsens in young BCs who underwent important surgeries, such as bilateral mastectomy. In particular, BCs who underwent a bilateral mastectomy reported persistent anxiety, body image, and sexual concerns that also lasted up to 5 years after diagnosis and surgeries [9]. Indeed, other studies reported nearly 60 % of breast cancer survivors undergoing different treatments continued to experience reduced overall QoL even after completing chemotherapy and around half of them experience some form of sexual difficulty, with 45 % specifically noting sexual pain [[10], [11], [12]]. However, this specific need has not been adequately taken into account during the clinical consultation [13]. As pointed out by King and colleagues (2024), BCs live in a sort of “interspace” between “health and disease” Armoogum et al., 2020; [6], struggling with the need for normalization Masiero, Spada, et al., 2023 [[14], [15]]. From a physical point of view, BCs reported symptomatology such as chronic pain Masiero et al., 2024 [16]; [17], osteoporosis, hypertension, heart failure [7], sleep disorders, fatigue, sexual and fertility problems, cognitive impairment, and augmented risk of subsequent primary cancers [6,18]. Moreover, BCs seem to have central behavioral and lifestyle risk factors, such as lacking adequate nutrition habits, bringing them to an increased risk of obesity, high alcohol consumption, and tobacco smoking [19]. Some specific physical aspects significantly impact QoL, such as chronic pain Filipponi et al., 2022, chemo-brain, sleep disorders, and fatigue [[20]21]. Chronic pain is a typical long-term comorbidity associated with anticancer treatments (both medications and surgeries), and about 13%–51 % of BCs suffer from pain, as reported by Yin and colleagues [22], in which physical, psychological, and social variables interact and limit the BCs' capacity to return to their daily life Masiero et al., 2024. Further, BCs are exposed to the risk of developing cancer-related cognitive impairment (e.g., memory and attention deficits). This phenomenon is not only a consequence of chemotherapy but might also result from radiation and endocrine therapy or surgery Cathcart-Rake & Ruddy, 2023. Additionally, sleep disorders are prevalent in BCs: around 73 % of survivors experienced moderate-severe sleep problems [23] that might be provoked by endocrine therapy Cathcart-Rake & Ruddy, 2023. Fatigue is another critical impairment that impacts not only at the physical level but also at cognitive and affective. BCs might show a significant level of fatigue that characterizes each phase of the survivorship (active, permanent, and extended), influencing their reintegration into normal daily activities (e.g., managing family, leisure time, and social relationships, resuming employment, etc.) [24].

Besides, being a cancer survivor is related to several psychosocial issues that contribute to defining diverse QoL trajectories [25], such as dealing with uncertainty, fear of cancer recurrence, and financial toxicity. Firkins and colleagues (2020) stated that survivors have to encompass medical treatments and routine clinical evaluations in their lives, building a balance between the physical and emotional burden of the treatments and personal life, and finally, dealing with uncertainty related to the disease. This fragility is a typical state experienced by patients with metastatic breast cancer. Indeed, in this clinical condition, the primary aim of the anticancer treatments is deferring disease progression, providing suitable control of the side effects (e.g., pain and diarrhea) and psychological symptoms (e.g., worry, anxiety, fear of cancer progression and its spread), supporting the management of the uncertainty, and the ongoing adaptation of the treatment protocols, and finally navigating in cancer treatment decisions Masiero, Spada, et al., 2023; [26]. Thus, metastatic breast cancer patients deal with the uncertainty related to the disease's evolutions, side-effects of the treatments, emotional burden, and the “need to live” and “not survive.” The fear of cancer recurrence is another substantial strain characterizing survivorship Cathcart-Rake & Ruddy, 2023; [27,28]. A cohort study on young BCs identified five trajectories of fear of recurrence (Stable/Low vs. Moderate/improving vs. High/improving vs. Moderate/worsening vs. High/stable), highlighting that one-third of BCs did not report a reduction over time [27] having a profound negative impact of QoL [28]. Another important point that should be considered is related to the financial toxicity. American studies reported that around 50 % of survivors are at risk of financial toxicity as a consequence of cancer care [29,30]. The financial toxicity might have direct (e.g., economic depletion) and indirect consequences (e.g., screening and medication non-adherence, an increased risk of recurrence and mortality), worsening other survivorship problems, and finally, increasing burden and distress [29]. The prevalence of the financial toxicity is not related with the type of the healthcare system (private versus public) as suggested by Arenare and colleagues (2003) [31] Arenare et al., 2023. A recent model proposed by Kirchhoff and Jones [32,32] observed that cancer financial toxicity can be explained by a set of interrelated variables acting as direct causes and moderators: medical expenses, employment and edicational status, physical and psychological comorbidities, socio-economicus status before the diagnosis, type of treatment and social support. Overall, taking into consideration the consequences of a cancer diagnosis means also reflecting on the bearing on the mind of the person with and after the cancer. Extensive evidence has underscored the necessity to feed interventions and systematic actions able to manage the long-term physical, psychological, and social consequences of cancer, enhancing tertiary prevention and second-primary cancer incidence and care coordination Brauer et al., 2021; [[33], [34]]. In this perspective, it is mandatory to evaluate QoL in the survivor trajectory in order to identify trajectories at risk of a lower QoL early and to provide specific interventions to boost it [7,34]. However, the evaluation of the QoL should be based on the assessment of the main physical, psychological, and social challenges characterizing survivorship trajectory. The integration of all aspects defining cancer survivors' lifespan is deeply reflected in their QoL perception, a patient's outcome significantly changes along the overall care process. Since treatment options may occasionally demonstrate comparable efficacy in terms of traditional outcomes like survival or tumor response but diverge in terms of toxicity or side effects, new metrics such as Health-Related Quality of Life (HRQoL) can serve as a valuable tool not only to inform treatment decisions but also to identify long-term sequelae (Clarijs et al., 2021). While medical cancer treatments have seen rapid advancements in recent years, the development of instruments measuring QoL has not been aligned with this progress (Briggs et al., 2022; Clarijs et al., 2021; Cella et al., 2002). Consequently, these tools may not comprehensively capture all the current experiences reported by cancer survivors.

2 QoL an integrated vision: A systematic overview

One of the foundational principles of the EC Mission on Cancer is to enhance or maintain the QoL for patients at every stage of cancer—from diagnosis through treatment, survivorship, and even in the advanced terminal phases of non-curable cases (European Commission, 2022). Rather than focusing solely on the temporal aspect of post-diagnosis survival, emphasis should also be placed on the qualitative aspects of life (“We should no longer focus on ‘how long’ people live after diagnosis, but rather on ‘how well and how long’ they live”) (Europe's Beating Cancer Plan, 2021). In this vein, the Europe's Beating Cancer Plan stressed the importance of prolonging cancer patients' survival time and promoting meaningful existence. Indeed, the healthcare system should work to guarantee the absence of discrimination, equitable access to resources, and better management of late- and long-term treatment sequelae and unmet needs that deeply affect QoL. To fulfill this aim, the introduction of Patient Reported Outcomes (PROs) and the assessment of QoL in cancer survivorship would help in adequately understanding patients' overall experience, allowing early detection of worsening adverse symptoms and potentially enhancing patient information and guidance (Mlakarr et al., 2022; Di Maio et al., 2022). QoL outcomes can help identify patients' unique challenges and experiences after treatment's completion. This data holds significant importance in informing patients about the anticipated outcomes of treatments and identifying the rehabilitation needs of cancer survivors (Jacobsen et al., 2011). On the other hand, healthcare providers and policymakers start considering QoL when making clinical and reimbursement decisions due to its relevance in patients' survivorship phase. Indeed, studies reported significant correlations between HRQoL outcomes and mortality risk, comorbidities, prognosis, as well as dissatisfaction level in breast cancer survivors (Park et al., 2021). Thus, QoL has emerged as a pivotal concept and patient-centered metric in the cancer survivorship domain, reflecting individuals' wellbeing beyond mere medical outcomes, as reported in a systematic review published in 2015, synthetizing the existing definitions of QoL in cancer. Lavdaniti and Tsitsis (2015) highlighted the lack of a common definition of QoL, while different conceptualizations have been proposed over the last century; the growing scientific literature described QoL as a multidimensional concept, including different aspects of patients' daily life. Specifically, physical functioning, emotional wellbeing, social aspects, and spirituality have been included in the broader term of QoL. Since those dimensions greatly vary along the cancer trajectory, introducing tools assessing the whole patient's experience would be paramount (Clarijs et al., 2021). We argue that an intrinsic multifaced nature of QoL would be able to deeply reflect all the aspects included in the cancer survivorship phase, encompassing long-term physical, emotional, social, and existential challenges. Despite the acknowledged importance of the complex nature of the QoL in cancer survivorship, currently, the dynamic interplay of physical symptoms, psychological distress, social support, and existential concerns characterizing the experiences of cancer survivors are not always adequately collected and considered; these dimensions are not isolated, but rather intricately interconnected, influencing each other and contributing to the overall wellbeing of survivors (Chaturvedi & Muliyala, 2016; Dow et al., 1999). The last scientific literature review identified EORTC-QLQ and FACT questionnaires as the most used tools to capture QoL dimensions in cancer patients entirely. However, the use of these questionnaires may fail in successfully identifying some of the main issues related to cancer survivorship: fear of cancer recurrence, cognitive dysfunctions, as well as financial concerns deeply affecting the overall perception of QoL should be included within the QoL assessment (Chopra et al., 2012; Mlakar et al., 2021). The recent development of the EORTC QLQ-SURV100 (2023) is probably the first attempt – although not yet validated - to address this lack by introducing items investigating survivorship issues (e.g., fear of recurrence, post-traumatic growth, and long-term side effects of treatment) (van Leeuwen et al., 2023). However, this EORTC module does not adequately consider cognitive aspects, even though frequently reported by cancer survivors; indeed, a few items – the same included in the EORTC QLQ C30 - have been selected in the overall measurement of QoL in cancer survivorship.

Finally, instruments developed to measure QoL dimensions are typically created by healthcare professionals and researchers, only sometimes properly considering patients' needs. In this vein, the recent European Commission has opened research calls, and cancer policy bodies claimed for projects aimed at developing new tools able to adequately capture the quality of life aspects of cancer patients and survivors (e.g., Call HORIZON-MISS-2021-CANCER-02-02). The integration of these predictors into disease definition is a crucial element in the management of cancer survivors, given that stress responses, affective axis disturbances (e.g., anxiety and depression), and social isolation may affect cancer onset, growth, metastasis, and overall its progression via different bio-physiological and inflammatory mechanisms Eckerling et al., 2021 [35]. Some studies highlighted the importance of improving the assessment of the QoL in the cancer domain due to the introduction of new anticancer treatments that bring different consequences and impacts on patient's QoL Mokhtari-Hessari & Montazeri, 2020 [36]. These data highlight the importance of further research and development in the field of QoL assessment to ensure that cancer survivors receive support that addresses their evolving and multifaced needs in the context of medical care (Van Leeuwen et al., 2018).

3 Conclusion

Addressing the needs of the expanding population of long-term cancer survivors requires a careful understanding of how long-term survivorship affects their QoL [7]. In particular, to identify physical, psychological, and social predictors of the QoL and their weight in delineating various survivorship trajectories. Moreover, the implementation of routine screening and treatment for psychological distress is now recognized as a critical standard of care across the cancer survivorship continuum [25]. Furthermore, studies observed the need to identify and standardize measures able to systematically draw all determinants, from the body to the mind, that contribute to defining QoL along with cancer survivorship [8]. Future studies should focus on developing, testing and implementing smooth and dynamic tools in clinical practice that can provide a more comprehensive view of QoL and QoL trajectories, and earlier identify BC patients at a risk of a deteriorated QoL.

Funding statement

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Ethical approval

The Ethical Approval is not required.

CRediT authorship contribution statement

Chiara Marzorati: Writing – review & editing, Writing – original draft, Data curation, Conceptualization. Marianna Masiero: Writing – review & editing, Writing – original draft, Conceptualization. Gabriella Pravettoni: Supervision.

Declaration of competing interest

Given her role as Specialty Editor, Gabriella Pravettoni had no involvement in the peer-review of this article and has no involvement in the peer review of this article and has no access to information regarding its peer review.
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