Lessons learned from COVID-19: improving breast cancer care post-pandemic from the patient perspective

Globally, health services for breast cancer (BC) across the cancer continuum were significantly disrupted and compromised due to the coronavirus disease (COVID-19) pandemic [1]. Breast screening services were curtailed or paused during periods of COVID-19 restrictions [2]. Active cancer treatment, such as surgery, radiotherapy, and chemotherapy, was disrupted and/ or modified to account for the level of restrictions in place [3, 4]. Post-treatment care (i.e., routine care), which includes mammograms, follow-up appointments, blood tests, and other scans, was significantly disrupted during the pandemic [5]. Support services, which address the multi-disciplinary needs of those living with a diagnosis of cancer, including physiotherapy and psycho-oncology, were paused or modified during the pandemic [6, 7].

Breast screening services generally resumed after government restrictions were lifted [8]; however, the impact of pausing breast screening services on BC diagnoses is only now becoming apparent with later stage and more symptomatic BC diagnoses [9] which may have a negative impact on survival rates in the future [10]. Furthermore, the issue of backlogs and waiting lists across the cancer continuum is continuing [11]. There are likely to be considerable unmet needs in healthcare for women with BC due to barriers such as availability, affordability, accessibility, and acceptability of BC services [12] which were apparent during the pandemic. Unmet needs, which can be measured by the difference between required healthcare services and received healthcare services, can assess the effectiveness in healthcare delivery [13]. A failure to address unmet needs can have a negative impact on an individual’s quality of life and other health outcomes [14]. Previous research conducted during the pandemic identified unmet needs for individuals living with a diagnosis of BC such as psychological and emotional support, management of side effects, complementary therapy, communication among healthcare providers, local health care services, and transportation [15]. However, similar research has not been conducted qualitatively post-pandemic to identify lasting unmet needs.

Considering the long-lasting consequences of the pandemic, the acquired knowledge and experience from COVID-19 can be used by healthcare providers and policy makers to improve BC care and to prepare health systems for future unexpected events [16]. Historically, pandemics and other crises have provided opportunities to strengthen health systems by exploiting faults in the pre-existing health system and exacerbating pre-existing health inequalities [17]. For example, low socio-economic status (SES) has been associated with higher disease burden [18] and decreased access to healthcare [19]. Within the context of non-communicable diseases, including BC, the social determinants of health (SDH) framework have been applied to the COVID-19 pandemic to explain health disparities [20]. Specific to BC care, SDH identified during the pandemic include age, race, insurance status, and region (1); however, it is unknown whether these SDH persist post-pandemic. Therefore, health systems should respond to the COVID-19 pandemic by addressing the multidisciplinary and personalized needs of all individuals to improve health equality.

The reorganization of BC services during the pandemic provides an opportunity to improve overall BC care and the experience and priorities of women with BC. To effectively address the needs of individuals, the patient experience and voice is integral for healthcare improvement. The aims of this qualitative study are (i) to explore and identify the unmet needs, patient-priorities, and recommendations for improvements in BC healthcare post-pandemic and (ii) to understand how they may vary for women with BC according to SDH, in particular SES.

The current study found that women with a diagnosis of BC are experiencing many unmet needs associated with their BC care post-pandemic. Unmet needs included disruption and discontinuation of routine BC care, a lack of treatments and support services to address women’s mental and physical well-being, and a lack of financial support for those women of low SES to help them access and obtain BC care. Considering such unmet needs, women identified their priorities for receiving adequate BC care and further proposed recommendations for improving BC care in the future. Cohesion within BC health care delivery and improved communication among BC healthcare providers were considered top priorities, both of which were perceived to empower women in managing their BC care. The following three recommendations addressed unmet needs and patient priorities: (1) improving the transition from active to post-treatment care, (2) enhancing and promoting support resources, and (3) appropriate adaptation of telemedicine.

Unmet supportive care needs were common for all BC patients throughout the pandemic, including physical and psychological needs, communication with clinicians, health system information needs, and other financial and social needs [30]. A previous quantitative study conducted during the pandemic found that unmet needs for BC survivors can be addressed with either comprehensive care or psychological and emotional support and women who reported more unmet needs also reported a significantly lower quality of life [15]. The results of our study found that women of low SES experienced greater disruption to routine care and increased financial difficulties specific to BC, which is consistent with research conducted prior to the pandemic [31]. It is likely the pandemic exacerbated pre-existing socio-economic inequalities in BC care; therefore, women who experienced greater unmet needs should be reintegrated into routine BC care along the entire cancer continuum [22].

The identification of patient priorities for personalized BC care ensures equality in BC care [32]. The women in our study identified cohesion and communication as top priorities; however, poorer cohesion and communication were both common for women from lower SES backgrounds. Personalized BC care should address comprehensive continuity for all women, regardless of SES, to improve equity in healthcare services. Women in this study proposed improving the transition from active to post-treatment by having a designated, or liaison, healthcare professional to support them with the transition. Research has shown the multidisciplinary benefits of a liaison nurse for cancer care, including physical, psychosocial, and communicative outcomes [33]. Cancer support centers also improve the transition from active treatment by providing cancer survivors a social and community network to address multidisciplinary needs [34]. However, the pandemic created barriers towards accessing such resources. Women should be made more aware of the availability of these centers, and other supportive care, directly from their BC care team.

Providing financial aid and transportation means to women in need, especially women from low SES backgrounds, can address health inequalities specific to accessing and obtaining BC care [35]. Strategies from a health systems level for reducing cancer-related inequalities include enhancing patient navigation along the cancer continuum and integrating telemedicine for routine care [36]. Furthermore, transportation barriers and auxiliary costs can be addressed with telemedicine, which was a widely utilized practice during the COVID-19 pandemic [37]. In addition, telemedicine can improve communication with continued contact with BC health professionals. As BC services recover from the COVID-19 pandemic, consideration should be given to the use of telemedicine in BC care and how it could be used more effectively to support women.

The study has a number of strengths including the large number of women interviewed and the selection via stratified purposive sampling to ensure diverse representation. This study is one of few studies to associate SDH, in particular SES, with BC care experience. The interviews were conducted immediately following COVID-19 government restrictions; therefore, they were timely and represent experiences of the transition from pandemic restrictions. There is limited research post-pandemic from the patient perspective; therefore, it addresses an evidence gap. However, there are several limitations to the study regarding generalizability. The participants do not represent all women living with a diagnosis of BC. The study was conducted in Ireland, a country which experienced severe and longer periods of restrictions compared with other countries [38]. Ireland remains the only country within the European Union without universal healthcare, and health inequalities have been associated with health insurance status and SES [39]. To enhance health equality in BC care, the findings from this research, in tandem with previous related research conducted during the pandemic [22], suggest that all women with a diagnosis of BC should be entitled to a medical card to assist with healthcare costs, if needed. Despite differences in health care systems, women with BC may be experiencing similar unmet needs across different countries and further research across countries with varying health care systems is needed to fully understand unmet needs for women with BC post-pandemic and inequities in these unmet needs. Additional future research may include comparing individual SDH characteristics to determine what SDH characteristics have a greater influence on women’s experience with BC care.

The pandemic has impacted BC services considerably for women in Ireland with BC, and this study has identified a range of unmet needs in BC care, patient-centered priorities, and recommendations for addressing these unmet needs. These priorities and recommendations align with the goals of the national cancer strategy, which aims to put structures in place to allow for increased patient involvement in the delivery of BC care going forward [40]. As health systems are recovering from the COVID-19 pandemic, the emphasis should be on both restoring access to BC care and improving the quality of BC care to achieve the best possible health outcomes for women living with and beyond a diagnosis of BC. Particular consideration needs to be given to those women from lower socioeconomic groups, in order to reduce health inequalities, which have been further exacerbated by the pandemic. As health systems are recovering from the COVID-19 pandemic, an emphasis to restore and enhance better BC care should be essential, with consideration and emphasis from the patient perspective.