Introduction

Healthcare systems and healthcare providers have been challenging with new cases of coronavirus and the contagious nature of the disease since the World Health Organization (WHO) declared the pandemic in February 2020 [1]. With the rapidly evolving COVID-19 pandemic worldwide, communities have practiced lockdowns, social distancing, and sheltering in place to “flatten the curve” to manage the rapid increase of the COVID-19 cases. Multiple uncertainties resulting from the pandemic negatively affect economic, political, and environmental issues globally [2]. These effects, along with the fear of COVID-19 infection, understandably caused anxiety, depression, and lower overall well-being among general populations [3]. Recent studies have highlighted the severe effects of the COVID-19 pandemic for all communities [2].

Although pandemic affects everyone at a different level, the challenges related to the pandemic can potentially jeopardize the lifetime wellbeing and quality-of-life (QOL) of individuals with cancer [1, 4]. Emerging data suggest that individuals with cancer have an increased risk for the COVID-19 disease and risk of severe events such as admission to the intensive care unit requiring invasive ventilation or death due to COVID-19 [1, 4, 5]. Being an individual affected by cancer and needing healthcare during the pandemic became challenging due to the competing risks of cancer progression versus COVID-19 infection [1, 6]. To minimize hospital visits and the risk of COVID-19 for cancer patients, diagnostic and surgical procedures were delayed, treatment plans were altered, and routine follow-up visits were postponed [6]. Healthcare providers have rapidly changed the model of care delivery [1, 7]. Telemedicine, remote monitoring, and home care were encouraged, and some medical and imaging services for people affected by cancer were re-organized to safely accommodate their needs [8].

Ultimately, the COVID-19 pandemic has disproportionately disrupted the lives of individuals affected by cancer, including those currently in treatment, those who completed treatment, and who are living cancer-free [1, 7]. Currently, there is limited evidence regarding the impacts of the pandemic on cancer survivors, particularly those who have completed treatment [7]. As in many other types of cancer, there are also challenges in managing survivorship care of women affected by breast cancer due to the limited use of healthcare resources and the measures taken to minimize the risk of the COVID-19 infection during the pandemic [9]. Although women are increasingly surviving breast cancer, most breast cancer survivors experience long-term and late effects of cancer treatment even during the pre-pandemic period that dramatically impair the quality of life [10]. It created an urgent need to understand the impacts of the pandemic on breast cancer survivors and how these impacts can be addressed to minimize the late and long-term effects to optimize the QOL during survivorships.

Therefore, this qualitative study aimed to explore the impacts of the COVID-19 pandemic on the quality of life of breast cancer survivors.

Methods

Design

This qualitative descriptive study included semi-structured interviews among women affected by breast cancer who completed their medical treatment within the last 5 years. The study was approved by the Ethics Committee of the Koc University, Istanbul, Turkey.

Sampling strategy

A convenience sample of women was recruited among participants of a mixed-method study (unpublished study) to evaluate the QOL and needs of breast cancer survivors. The parent study’s eligibility criteria included having a breast cancer diagnosis, completing the medical cancer treatments, being over 18 years old, speaking Turkish, and giving verbal consent. Twenty women had been recruited in November–December 2019 through the health record of an oncology clinic. Each woman who participated in that study was called to be invited to this current study. Women were informed about the study in May 2020, and a phone interview with the volunteers was scheduled. The total sample consisted of 18 women because one woman was deceased, and one woman could not be reached.

Data collection

We used a semi-structured interview guide to capture all experiences of women affecting their QOL during the pandemic. After the declaration of the COVID-19 pandemic on March 11th, 2020, Turkey had been on lockdown until the beginning of June 2020. One researcher (SIP) conducted recruitment and interviews in May 2020. The researcher (SIP) has been responsible for data collection with other researchers (GO, YA) in the parent study. The audio-recorded interviews lasted approximately 20–30 min and were transcribed verbatim.

Analyses

A directed content analysis [11] was performed using the guiding themes of the quality-of-life domains of the EORTC QLQ-C30 questionnaire [12]. The dimension of EORTC helped to determine the initial coding scheme. Two researchers (MS, GB) read the transcript and highlight all text that, on the first impression, appears to represent any QOL experiences during the COVID-19 pandemic. Then, the same researchers coded all highlighted passages and categorized them using the dimensions of the QOL. Any text that was not categorized with the initial coding was given a new code added to related dimensions of the QOL. The interactive process was conducted until the final codes/categories were established. The same researchers (MS, GB) reviewed the coding structure with the researcher (SIP) who conducted interviews to reach an agreement. In the final stage, a consensus for each code/category was achieved among all researchers.

Results

Patient characteristics

All women had state health insurance covering survivorship care after the completion of medical cancer treatment. The mean age was 51 ± 5.9 (years), and the average months since the completion of their last chemotherapy were 26.5 ± 9.8 (9–48) (Table 1).

Table 1 Descriptive characteristics of women affected by cancer
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The exploration of themes

The themes, categories, and codes that emerged from the directed content analysis are given in Table 2 and Table 3. The quotations from participants are given with an identity document (ID) number to preserve anonymity.

  • Theme 1: Physical functioning includes the ability to perform daily living activities and changes affecting their ability to perform activities of daily living.

Table 2 The themes, categories, and codes
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Table 3 Description of the themes, categories, and codes
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Changes in physical activity and weight

While almost all women complained about the limited physical activity, some women stated that they could find new ways to stay active such as walking in the home or the garden, starting yoga or mediation, and attending online exercise classes. One woman who bought a treadmill during the lockdown stated, “I bought a treadmill in the first week. I do sports better than before, and I do yoga. I’m doing breathing techniques” (ID-2).

However, women appeared to be concerning about their physical health due to the extended lockdowns. Of women, eight mentioned their weight gain threatening their health and daily life. One woman expressed her concern, “I mean, after a while, the fear of physical health gets ahead from psychological problems because of staying all the time indoors… Even if I do exercise, I think it affects negatively because space is limited at home” (ID-12).

New physical symptoms

Lymphedema, fatigue, eczema, and bone pain/tingling were reported that developed during the COVID-19 pandemic. Lymphedema was reported due to increased household chores; that woman mentioned she could not go to the hospital yet for her painful lymphedema. This woman stated that “My arm was swollen because I did too much work (chores) at home, and then my left arm was swollen so bad. In fact, I will go to the lymphedema department for it, so I sometimes have pain on my left side… I also have a lot of back pain, so how can I tell you, my purse even is getting too heavy” (ID-4).

Due to increased chores and lack of physical activity, some women mentioned their increased fatigue. One woman stated that due to stress and washing hands more often, she developed eczema. Some women developed bone pain and tingling due to decreased physical activity or vitamin D deficiency caused by limited sunlight exposure as they reported.

  • Theme 2: Role functioning includes any involvement in life situations related to work-life, studies, and everyday living activities.

Continue to work

Although there are four women employed at the time of the interview, two of them mentioned that they preferred to continue working with measures that they took for the COVID-19 pandemic. However, one woman mentioned having constant warnings from her children and husband for not continuing to work due to the fear of CVOID-19.

Changes in household chores

In general, women reported new distributions of household tasks at their homes. Some had their husbands or children go shopping; some only did online shopping to minimize COVID-19 exposure. Two women stated that their household chores increased because of not having regular housekeeping that they usually had. This increased work led to some new symptoms, including a newly developed lymphedema and fatigue.

  • Theme 3: Emotional functioning includes specific reactions to the COVID-19 pandemic and related measures.

Emotional changes

Anxiety, being oversensitive, and burnout were the emotional changes women reported. Although women acknowledged that the pandemic is stressful for everyone, as a person affected by cancer, they felt more emotions involved during the pandemic than other people. One woman described how emotional/oversensitive she felt by saying, “If someone said, “go a little further,” I would cry. I mean, my psychology is broken. I even thought of going to a psychologist during this period. Of course, I couldn’t go because it was not allowed” (ID-17). Another woman expressed how she felt emotionally worn out “I never leave the house, except for the hospital. I always keep my gloves, mask, and distance while out. I disinfect myself. But here we are stuck in the houses. I never went out because I am chronic ill. I guess that thought made me collapse…” (ID-15).

Fear of having COVID-19

Three women described psychosomatic symptoms related to their fear of CVODI-19 infection. Although they acknowledged that this is temporary due to the pandemic, women appear to be still struggling to overcome their fear. In addition to constant heavy cleaning at home, some women reported that they kept checking their self and their children’s health to detect symptoms early if it happens. Even one woman expressed her worry for her children by saying, “I am worried more for my children than myself because my children are young. It is very difficult to protect them…” (ID-7).

  • Theme 4: Cognitive functioning includes any reactions that involve knowledge, information, reasoning, and reactions to the COVID-19 pandemic and its measures.

Risk perception about COVID-19 infection

Although most women perceived high risk for COVID-19 infection, three women appeared confused. Two women reported that they did not see any increased risk for themselves; however, they followed the recommendations for the COVID-19 infection.

Those with uncertain or not seeing any high risk referred to their immune system as a rationale for their thoughts. One woman said, “…Of course, we are among the risky people, after all of our diseases, right? … I wonder if my immunity is strong. When my immunity gets back to a normal level, it has been two years since I received chemotherapy. I don’t know if my immune system is good right now. I look at my blood test results; the results of my blood test are normal. But I don’t know if this shows my immune system.” (ID-13).

Reactions to COVID-19 measures

Most women stated that they all observed the recommended measures related to the pandemic, such as washing hands, wearing a mask, and performing social distancing. Most women also reported strict hygiene practices, such as cleaning the home often, washing, or keeping shopping bags outside before placing them in the kitchen. However, some expressed their struggles in understanding and observing the COVID-19 measures at home. One woman stated that “So how do you maintain your social distance with the person you live with in the same house. If one sneezes, they say that it can be passed on; they say if you pass through there, you can catch it too. It does not seem real to me.” (ID-11).

Some women reported that they tried to live their life as normal as possible. Because women needed to go to the hospital for their follow-up visits or other health issues, they had to live with COVID-19 restrictions. Some women felt ready to take the COVID-19 measures, including staying at home and wearing a mask due to their chemotherapy experiences. One woman stated that “So we have been wearing a mask for a year anyway. My kids have bought a face shield too. I need to get my port flushed every six weeks. I could postpone it, but COVID has been overflowing at this time, and I had to go at the end” (ID-16). One woman also stated that she had the opportunity to listen to her inner voice to reflect on her life during the quarantine.

  • Theme 5: Social functioning includes women’s ability to fulfill their social activities and relationships with family.

Familial relationship changes

Increased time spent with family, having a continuous warning about protecting themselves from the COVID-19 infection, performing social distancing at home, and having children infected by COVID-19 were some experiences reported by the women. One woman repeatedly reported that her daughter kept warning about the measurements of COVID-19. One woman shared her experience of having her children infected by the COVID-19 and how she focused on her children’s life at that time and ignored her own health. In addition to these unpleasant experiences, one woman was pleased to spend more time with her husband and children with Down syndrome.

Limited social interaction

Generally, women did not accept visitors and went out only for essential needs during the pandemic. One woman described the measures taken in her workplace; some women had their husbands or children shopped for them or did online shopping with strict cleaning. One woman who was observing the measurements stated that “so I still stay home… Only my husband goes out to provide our necessary needs. Are we afraid? I am twice as scared as other people. But somehow, it seems necessary to move on with some normalization” (ID-7).

  • Theme 6: General health/health service utilization includes routine follow-ups and general healthy behaviors develop during the pandemic.

Changes in routine follow-ups

Six women stated their routine follow-up appointments had been canceled and rescheduled. Six women had no cancelations and would follow their hospital appointments as planned before the pandemic. Four women stated that no appointments canceled yet, but they did not think of going to the hospital due to fear of COVID-19 infection. Most women appeared unwilling to go to the hospital and concerned about being at the hospital due to the high risk of COVID-19 exposure. However, two women appeared to be willing to come to the hospital on a scheduled day, emphasizing the need for having USG and other blood tests.

Four women had upcoming appointments and been thinking of either talking with their physician to decide or not coming to their hospital visit. One woman concerned about not being treated well as she was before the pandemic stated, “I will call my doctor. If he says come, I will, but if he says not, to be honest, I do not think I will go to the hospital. When I go to the hospital, I get a completely different interest because of the Corona. I am not thoroughly examined; something is thrown into the Corona immediately as if you had Corona” (ID-10).

One woman shared her feelings about having two options instead of having one recommendation on what to do, including to cancel or come to her appointment. She stated, “it appears to me so weird that I was told that the physician sees his patients, you can decide whether you want to come or postpone your appointment. I expected it to be canceled by the hospital. I struggled on rescheduling it at the end” (ID-13).

Changes in the diet

Three women had changed their diet entirely or to a greater extent. Four women started taking supplements such as vitamin D, vitamin C, propolis, multivitamins, mineral, and ginseng supplements.

Discussion

Many cancer survivors have fatigue, sleep problems, impaired physical functioning, pain, and several physical symptoms [13] that impair their QOL. In this study, breast cancer survivors reported new symptoms that occurred during the pandemic, mostly due to physical inactivity, increased household chores, or stress experienced during the pandemic. Lymphedema, eczema, increased fatigue, general pain, bone pain, and tingling were the physical symptoms women suffered. Similarly, Helm et al. reported that primary complaints of women affected by breast cancer during the closure of rehabilitation services due to the COVID-19 pandemic were shoulder stiffness, pain, and lymphedema [14]. Miaskowski et al. reported that the majority of the cancer patients had evening fatigue (55.9%), cognitive impairment (91.5%), and pain (75.9%) during the pandemic in a sample with 80% of breast cancer patients [15]. Although some women expressed constant bone pain and tingling due to lack of exercise and physical activity, some could find new ways to stay active. Some women started yoga, meditation, signed up for an online exercise group, and even bought a treadmill to exercise at home. Cancer survivors need to incorporate targeted and individualized exercise, which can significantly reduce morbidity and mortality of cancer [16].

In this study, weight gain was a big concern for most cancer survivors due to lack of physical activity during the lockdown. Weight gain is a common problem for breast cancer survivors and can cause adverse health outcomes. Few women reported developing a healthy diet, and some women started using supplements such as vitamin D, vitamin C, propolis, and multivitamins, mineral, and ginseng supplements to boost their immune system to prevent COVID-19 infection. Regarding individuals affected by cancer, there is a concern about the overuse of supplements, specifically antioxidants, which have been promoted to prevent and treat COVID-19 infection [17]. Although some women in this study mentioned their physician to consult before using any supplements, this study shows the need for nutrition care for those affected by cancer to educate them about a healthy diet and supplements based on evidence.

One woman had developed lymphedema during the pandemic and could not have healthcare for this problem. Some evidence suggests that specific exercises may reduce the risk and severity of lymphedema [16, 18]. However, when left unmanaged, lymphedema can cause chronic inflammation, increased risk of tissue fibrosis, infection, and impaired wound healing [14]. As alternative care models, telehealth/remote care delivery for survivorship are recommended to support patients living with the late and long-term effects of cancer treatment. During the pandemic, telehealth was encouraged [8]; however, since it requires structure and technology to offer, telehealth has not been available in many healthcare settings. In this study, no women mentioned any telehealth utilization for their follow-up care. Helm et al. reported that 33% of women with shoulder stiffness, pain, or lymphedema had received telehealth [14]. Incorporating psychologically informed physical therapy through telehealth might be an option to support cancer survivors for healthy nutrition and physical activity to manage fatigue, sleep problems, and stress related to the pandemic [14].

Although two women mentioned positive aspects of being at home and spent more time with loved ones, anxiety, feeling oversensitive, and emotional burnout were the psychological effects of the COVID-19 pandemic that women described in this study. Emotional challenges appeared to be more intense and unbearable due to not having access to psychological support and activities to ease their emotions. The pandemic appeared to have created additional stress and anxiety among breast cancer survivors. In another study, 51.4% of women with ovarian cancer had anxiety, and 26.5% had depression during the COVID-19 pandemic [19]. Similarly, Miaskowski et al. reported that 31.6% of cancer patients had high-stress scores, and cancer patients exceeded previous benchmarks in oncology patients meaning possible PTSD. In this stressed group, patients also reported depression (71.2%), anxiety (78.0%), and sleep disturbance (78.0%) [15]. Although no women reported social isolation or loneliness, limited social interactions may cause loneliness and impaired psychological well-being that cancer survivors can even experience before the COVID-19 pandemic [20]. These findings show the urgent need for innovative ways to tackle these psychological problems and their long-term effects as the pandemic has been evolving.

In the study, most women had delays or cancelations in follow-up visits. While they were trying to make the best decision for themselves, some women expressed anxiety about going to the hospital due to high infection risk and some expressed the frustration of making decisions on their hospital visit. Frey et al. reported that 33% of women with ovarian cancer experienced a delay in some components of their cancer care [29]. Some recent guidelines provide recommendations that help healthcare providers [1, 8, 21] in decision-making on cancer care during the pandemic. Unfortunately, there are no specific guidelines for cancer survivors who completed their medical treatment. As the pandemic continues to evolve and evidence increases, more specific recommendations and guidelines are needed for the cancer survivors addressing their QOL [7]. Nurses have a crucial role in developing survivorship care guidelines and creating alternative care models for cancer survivors during and beyond the pandemic. The use of alternative care models led by nurses such as shared care, nurse-led care, and self-management may free up oncologists to focus on acute patients requiring urgent care and reduce the risk for COVID-19 exposure by minimizing unnecessary presentations to acute care facilities [22].

Conclusion

Alternative healthcare delivery models for cancer survivors are needed to ensure that patients are least affected by this pandemic. Physical health challenges, including increased weight and lack of physical activity, and symptoms such as lymphedema, pain, and fatigue need to be addressed to prevent their long-term effects on QOL among breast cancer survivors. The psychological effects of the pandemic, such as depression and anxiety, may also impair long-term QOL if not addressed. As pandemic evolves into different stages, oncology nurses in a collaboration with multidisciplinary oncology team need to show leadership in managing the pandemic in oncology settings and meeting the needs of individuals affected by cancer during the health crisis. While we need to assess the immediate impacts of the COVID-19 pandemic, further studies are recommended focusing on the long-term effects of the pandemic on different aspects of QOL among cancer survivors.

Limitations

Convenience sample of breast cancer survivors may affect the participants’ responses and limit the generalizability of findings to people affected by different cancer types. Data were gathered at a specific point of time, which does not capture women’s dynamic experiences as the pandemic evolves.