key: cord-0721315-8m138vmp
authors: Frey, Melissa K.; Chapman-Davis, Eloise; Glynn, Shannon M.; Lin, Jenny; Ellis, Annie E.; Tomita, Shannon; Fowlkes, Rana Khan; Thomas, Charlene; Christos, Paul J.; Cantillo, Evelyn; Zeligs, Kristen; Holcomb, Kevin; Blank, Stephanie V.
title: Adapting and avoiding coping strategies for women with ovarian cancer during the COVID-19 pandemic
date: 2020-11-19
journal: Gynecol Oncol
DOI: 10.1016/j.ygyno.2020.11.017
sha: bb0d9f5994a1a580fab443b6f045496e95929f84
doc_id: 721315
cord_uid: 8m138vmp

Background: The COVID-19 pandemic has resulted in unprecedented challenges for people living with cancer, impacting not only physical health but psychological well-being. The psychological response affects the individual as well as the community and can persist long after the outbreak. We aim to assess coping strategies employed by women with ovarian cancer during the COVID-19 pandemic. Methods: Women with a current or prior diagnosis of ovarian cancer completed an online survey which included a query about coping strategies during the COVID-19 pandemic. The survey was distributed from March 30th through April 13, 2020 through survivor networks and social media. Results: Six hundred and three women visited the survey website during the study period and 555 (92.0%) completed the survey. Four hundred and eight (73.5%) provided information on coping strategies utilized during COVID-19. Among those who responded, the median age was 58 years (range 20–85) and 150 participants (40.8%) were undergoing active cancer treatment. Commonly utilized adaptive coping strategies included emotional support (159, 39.0%), self care (148, 36.3%), hobbies (139, 34.1%), planning (87, 21.3%), positive reframing (54, 13.2%), religion (50, 12.3%) and instrumental support (38, 9.3%). Many participants also relied on avoidance coping strategies including self distraction (111, 27.2%) and substance use (19, 4.7%). Conclusions: Most ovarian cancer survivors are using adaptive, problem-focused coping strategies during the COVID-19 pandemic, however many are practicing avoidance strategies as well. As coping mechanisms profoundly impact quality of life, oncology providers must assist patients in identifying coping strategies that optimize physical and psychological well-being.

COVID-19 is likely uniquely unsettling to people living with cancer: their treatments are interrupted, surgeries cancelled, regular oncology evaluations rescheduled and the interaction between COVID-19 and cancer remains unclear. Early reports suggest that people with cancer may experience worse outcomes from COVID-19 compared to those without cancer, including higher risk of admission to intensive care units, requirement for invasive ventilation and death. [1, 2] Oncology providers and patients find themselves struggling to balance plausible fears of COVID-19 exposure and concern about cancer progression due to delaying cancer care. [3, 4] Several medical societies have provided guidance for oncology providers during the COVID-19 pandemic and there is a growing literature on coping strategies utilized by health care workers and medical trainees. [5] [6] [7] [8] However, there is a dearth of reports of patients' psychosocial perspectives during this crisis. [9] Prior studies suggest that ovarian cancer survivors may experience a unique psychological response to their disease. Although most women present at advanced stage with poor prognosis, many achieve long overall survival, with multiple, often toxic, treatment regimens periods of remission and recurrence. [10, 11] 6 Among those tested, three had a positive test and six had a negative test. None of the participants reported having been hospitalized, admitted to an intensive care unit or requiring mechanical ventilation due to COVID-19.

When asked whether or not they had access to online or in-person counseling, 208 (55.5%) of the 375 responders said yes, 83 (22.1%) no and 84 (22.4%) were uncertain. Three hundred and one (79.6%) of the 378 respondents participated in networks for ovarian cancer survivors, 67 (17.7%) did not and 10 (2.6%) were uncertain.

Participants were asked, via free text, "How are you managing during this stressful time?" Participants reported using a median of two coping strategies (range 1-5) (see Table 1 for description of coping strategies). When coders evaluated the responses, the initial interrater reliability indicated 97% agreement between the two coders. The coders discussed and resolved coding discrepancies and achieved perfect agreement. The most common coping strategies included emotional support (159, 39.0%), self care (148, 36.3%), hobbies (139, 34.1%), self distraction (111, 27.2%), planning (87, 21.3%), positive reframing (54, 13.2%), religion (50, 12.3%), and instrumental support (38, 9 .3%) ( Figure 1 ). Frequently used self care strategies included exercise (118, 28.9%), mindfulness/meditation (42, 10 .3%), yoga (23, 5.6%) and healthy eating (16, 3.9%). Frequently reported hobbies included reading (58, 14.2%), cooking/baking (24, 5.9%) spending time outdoors (24, 5 .9%) and gardening (18, 4.4%) . As one respondent wrote, "Keeping a routine! I am lucky and still able to work and love my coworkers. Walks with the dog in this gorgeous weather. Small projects that have realistic goals/ends. Sense of accomplishment" and another, "daily exercise preferably outside. Lots of phone/online communication with friends and family. Eating well. Something fun each day. Some quiet time each day." Sixty-eight participants reported using technology to obtain emotional or instrumental support by means including FaceTime, telephone and social media. One stated, "[I am] staying connected via Internet and social media" and another noted she used a "support group sponsored conference call" to cope. Thirteen participants reported limited consumption of news J o u r n a l P r e -p r o o f 7 as a coping strategy. This was considered planning / active coping as the intent behind this behavior was to make their situation better. [23] For example, one participant explained, "maintaining by not watching too much news and meditating, trying to live in the present."

Other coping strategies included substance use (19, 4.7%), acceptance (16, 3.9%), venting (12, 2.9%), humor (7, 1.7%), behavioral disengagement (6, 1.5%) and self blame (2, 0.5%) (Figure 1 ). Nineteen participants reporting using a total of 20 substance use coping mechanisms including using alcohol (4), drugs (11) and unhealthy eating (5). One participant stated, "I have a cocktail every night with my husband and I also have a prescription for 10 milligrams of Lorazepam if things REALLY get me anxious." Women did not report denial, a coping strategy previously described in the literature. [21] Coping strategies were further clustered into adaptive or dysfunctional approaches based on prior validated self-reported coping tools. [13, 24, 25] Three hundred and seventy-one participants (90.9%) reported using at least one adaptive coping strategy. Two hundred and sixty-two participants (64.2%) used exclusively adaptive coping strategies. The most common adaptive coping strategy was emotional support. One participant noted that she would have "regular visits with therapist and psychiatrist" and use "online support groups," while another commented, "thankful that my husband is beside me." Self care, hobbies, planning, positive reframing, and religion were also frequently used adaptive coping strategies. Participants often reported more than one of these, with one responding that, "Prayer. Choosing to be joyful, hopeful, grateful. Humor. Maintaining favorite outdoor activities. Qigong" all helped her to cope. Another said, "Being vocally grateful for home, family, food, rural countryside, community. Having a daily routine that provides a bit of structure and purposeful activity but is not too rigid."

One hundred and forty-six participants (35.8%) reported using at least one dysfunctional coping strategy. Thirty-seven participants (9.1%) exclusively used dysfunctional coping strategies and 109 (26.7%) a combination of adaptive and dysfunctional strategies. The most common dysfunctional coping strategy was self-distraction, followed by substance use and venting. One participant used sleep as a distractor, stating, "[I am] J o u r n a l P r e -p r o o f Journal Pre-proof 8 napping to escape reality" while another simply stated, "I keep busy all the time." Some participants expressed their frustration through their responses, which was coded as venting. For example, "Ok would be better if I could function better. Terribly debilitating back pain" and "I am not

[coping], I have a therapist but not finding her very helpful. She looks at her phone during our sessions." Participant demographic and clinical variables were evaluated for associations with employed individual and categorical (adaptive vs. dysfunctional) coping strategies. Subject age, race, ethnicity, current relationship status, living alone, highest level of education, cancer stage, having completed first line treatment, currently receiving treatment, access to counseling, participation in survivor networks, medical comorbidities and COVID-19-related delay in oncology care were not associated with any of the reported coping strategies ( Table 2) . Residing in states with low versus intermediate versus high COVID-19 case volume did not affect coping strategies.

Our survey captured the coping strategies of 408 women with ovarian cancer during the COVID-19 crises. Among our cohort, 40.8% were receiving cancer-directed treatment and 33.9% had a delay in some component of their oncologic care. These significant interruptions in cancer care are not surprising given that medical staff and resources had been redeployed to manage COVID-19, state government and hospital policies called for cancellation of non-emergent surgical procedures, and general recommendations were to avoid hospital visits due to infection risk as well as reinforcement of the current strategy of restrictive social distancing. The most commonly used coping strategies included: emotional support, self care, hobbies, self distraction, planning and positive reframing.

While qualitative studies have helped to illuminate the experiences of people coping with cancer, investigators also have quantitatively examined different coping strategies with validated self-reporting tools. [13] Functional coping involves addressing the problem causing distress and J o u r n a l P r e -p r o o f is often considered an adaptive response. Some examples of adaptive coping are making a plan of action or concentrating on the next step. Coping strategies that actively avoid the negative emotions associated with the problem are often considered potentially maladaptive or dysfunctional.

Examples of maladaptive or dysfunctional coping are self distraction, venting and using alcohol or drugs. [24] Self distraction has been characterized by such actions as daydreaming and sleeping to separate oneself from a stressor. While such avoidant coping mechanisms have been found to be adaptive in the short-term, long-term outcomes tend to be worse, including an increased risk of traumatic stress. [21, 28] Venting, defined as focusing on distressing and upsetting items and expressing those negative emotions, can lead one to concentrate on the distress, which may in fact exacerbate it. [29] Prior research has demonstrated that venting is associated with increased anxiety and decreased social and psychological well-being. [19, 30] Such coping mechanisms may worsen quality of life and decrease one's potential problem solving capacity and therefore are considered dysfunctional coping.

[19]

Among our cohort of women with ovarian cancer, 262 (64.2%) utilized exclusively adaptive coping strategies and 371 (90.9%) used at least one adaptive strategy. This finding was reassuring as prior literature demonstrates that strategies including emotional support and acceptance correlate with improved quality of life and mood. [14, 25, 31] Furthermore, engagement coping techniques including planning, seeking support and positive reframing may moderate the effects of symptom stress and distress on quality of life. Additionally, some of the self care strategies including exercise, mindfulness and healthy eating have been associated with improved cancer-related outcomes. [15, 32, 33] In contrast to adaptive coping strategies, dysfunctional or avoidance coping has been associated with greater symptom severity, distress and worse quality of life. [14, 34] In our cohort, 146 participants (35.8%) reported using at least one maladaptive coping strategy and 37 (9.1%) exclusively reported this type of coping. The most common maladaptive coping strategy was self distraction (27%), followed by substance use (5%), venting (3%), behavioral disengagement (1%) and self blame (0.5%). Given that our study period was relatively early in the pandemic, it is possible J o u r n a l P r e -p r o o f the solid minority of participants who engaged in self distraction did so for the initial, short-term benefit of this strategy. However, as the pandemic continues to pose a strong threat months later with few signs of a return to normal, this form of coping has the potential to result in negative longterm outcomes. This finding, while concerning, does reveal a potential opportunity for health care providers to work with women with ovarian cancer to improve their quality of life, as adaptive coping strategies have been effectively developed for people with cancer through educational programming. [35] [36] [37] [38] Religion and spirituality are critical for many people coping with a cancer diagnosis. Studies suggest that spiritual or religious coping is associated with higher quality of life and improved mental health. [39, 40] However, other studies suggest that people with advanced cancer struggle with religion and spiritualty and negative religious coping has been associated with psychological distress, suicidal ideation and worse quality of life. [41, 42] In our cohort, 50 participants (12.3%) utilized religious coping strategies. From our review of the responses, the religious coping strategies appeared to be adaptive, promoting psychological well-being.

With COVID-19-mandated social distancing practices limiting our respondents' abilities to be with friends and family members, technology improved access to emotional support, with half of the women in our survey employing emotional support coping strategies, doing so via electronic platforms. Technology also contributed to stress, with 13 women (3%) reporting needing to limit access to social media and the news to cope. The CDC has encouraged limiting exposure to news about the crisis as an active and adaptive coping strategy. [23] It is not surprising that, among our population of ovarian cancer survivors, the majority used at least one adaptive coping strategy. Ovarian cancer diagnosis, treatment and survival can be an extremely stressful and uncertain experience. Women often undergo major surgery and receive toxic anti-cancer treatments, and despite this the risk of recurrence is high. Ferrell et al. evaluated 1,282 communications from women with ovarian cancer and identified that distress, fear and uncertainty were reported in association with diagnosis. [10] However, focus on coping, renewed J o u r n a l P r e -p r o o f appreciation for life, and optimism were also reported throughout the disease course. In fact, in another study of 200 ovarian cancer survivors, 75% reported ovarian cancer highly impacted their life and an overwhelming majority reported that it had impacted their life in a positive way. [43] It is plausible that the experience of diagnosis, prognosis, treatment and long-term survival in ovarian cancer uniquely prepared our study population to adapt to the similarly stressful, uncertain and consuming circumstances of the COVID-19 pandemic.

Interestingly, patient demographic and clinical factors were not associated with any specific coping strategies. There are many plausible explanations. As mentioned above, survivors of ovarian cancer could be uniquely poised to cope with the COVID-19 pandemic simply given their previous experience with the disease. It is possible that the coping strategies employed by each survivor during her ovarian cancer journey correlates more with the strategies she used during the COVID-19 pandemic than any clinical or demographic factors.

Our study has several limitations. First, our aim was to assess the types of coping strategies utilized by ovarian cancer survivors, and therefore outcomes related to quality of life were not obtained. Given the cross-sectional study design, impact of coping strategies on anxiety, depression and quality of life over time cannot be determined in this present study and is an area of important research for future studies. Additionally, the patient cohort may not be representative of the greater population of women with ovarian cancer as survivors who participate in online surveys via survivor networks and Twitter and Facebook groups may be more reflective than those who do not. Furthermore, women with ovarian cancer responding to online survey invitations may represent a limited spectrum of survivors with computer literacy and access to computers. This cohort had extremely limited diversity in race and ethnicity with the majority of participants identifying as Non-Hispanic White. Emerging data suggest that the COVID-19 pandemic has disproportionately affected many minority and marginalized populations in the U.S. and future studies focused on more diverse populations are needed. [44, 45] All of these selection biases could have skewed our findings. However, our study did include a large number of J o u r n a l P r e -p r o o f ovarian cancer survivors with diversity in geographic location, age, education and spectrum on the treatment continuum and, to our knowledge, is one of the first reports on coping mechanisms utilized by people living with cancer during the COVID-19 crisis.

Our findings demonstrate that ovarian cancer survivors are primarily utilizing adaptive problem-focused coping strategies during the COVID-19 pandemic. While most of the reported strategies have been considered beneficial based on prior coping literature, associated with improved quality of life and well-being, 27% of the women in our cohort used self distraction and 5% substance use, both of which have been inversely associated with quality of life. Interestingly, more than half of emotional support occurred virtually, demonstrating that technology facilitated adaptive coping, which would not have been otherwise possible during the pandemic.

This survey was completed over the first two weeks of April 2020, earlier in the natural history of the pandemic, and, certainly, since then the COVID-19 situation has developed in a manner that was neither predictable nor controllable. The prolonged length of time that the pandemic has impacted survivors' interaction with their healthcare team and treatments could not have lessened the stress associated with the conflicting priorities described above, and therefore, if anything, the importance of focusing on coping strategies has increased with the time this public health crisis has continued.

Historians have noted that pandemics end when either they are medically resolved or fear about the disease wanes [46] ; given that neither of these options seems imminent, it is likely that women with ovarian cancer will need to navigate the stresses of both their condition and COVID-19

for the foreseeable future. The oncology and ovarian cancer literature suggest that people with cancer value communication with their treating oncologist and shared decision-making throughout the disease course, especially at times of uncertainty. [11] In addition to remaining well-informed on the emerging data on COVID-19 and cancer, oncologists must screen patients for their psychosocial well-being, inquire about coping strategies during these times and be prepared to provide support to promote coping that will improve psychological well-being and quality of life.

J o u r n a l P r e -p r o o f Accepting what has happened and learning to live with it

Getting comfort and understanding from others

Making fun of the situation / making jokes about it

Getting help and advice from others

Concentrating efforts on doing something about the situation / to make the situation better

Looking for something good in what is happening trying to see things in a more positive light

Trying to find comfort in religion, prayer or spiritual beliefs

Doing things to take care of oneself (e.g. exercise, healthy eating)

Participating in active hobbies (e.g. cooking, outdoors, pets)

Giving up trying to deal with it / the attempt to cope

Doing things to in order to avoid thinking about it J o u r n a l P r e -p r o o f

Using alcohol or other drugs to make myself feel better / help me get through it

Expressing my negative feelings / saying things to let my unpleasant feelings escape

Criticizing oneself / placing blame for things that have happened * 109 participants utilized both adaptive and dysfunctional coping strategies and were counted in both categories.

J o u r n a l P r e -p r o o f

COVID-19 mortality in patients with cancer on chemotherapy or other anticancer treatments: a prospective cohort study

Clinical impact of COVID-19 on patients with cancer (CCC19): a cohort study

Risk of COVID-19 for patients with cancer

Risk of COVID-19 for patients with cancer

Managing Cancer Care During the COVID-19 Pandemic: Agility and Collaboration Toward a Common Goal

Mitigating the Psychological Impact of COVID-19 on Healthcare Workers: A Digital Learning Package

Peer mentoring for medical students during COVID-19 pandemic via a social media platform

Coronavirus concerns: What do women with gynecologic cancer need to know during the COVID-19 crisis?

Psychological well being and quality of life in ovarian cancer survivors

A qualitative study of ovarian cancer survivors' perceptions of endpoints and goals of care

Coping: pitfalls and promise

Understanding and Addressing the Role of Coping in Palliative Care for Patients With Advanced Cancer

The relationship between coping strategies, quality of life, and mood in patients with incurable cancer

Coping and Prognostic Awareness in Patients With Advanced Cancer

Major depressive disorder, personality disorders, and coping strategies are independent risk factors for lower quality of life in non-metastatic breast cancer patients

Coping in Patients With Incurable Lung and Gastrointestinal Cancers: A Validation Study of the Brief COPE

Quality of life and mood in women receiving extensive chemotherapy for gynecologic cancer

Coping and quality of life in Turkish women living with ovarian cancer

Impact of the COVID-19 Pandemic on Quality of Life for Women with Ovarian Cancer

You want to measure coping but your protocol's too long: consider the brief COPE

Using thematic analysis in psychology. Qualitative Research in Psychology2006

Center for Disease Control and Prevention (CDC) Emergency Preparedness and Response: Taking Care of Your Emotional Health

An analysis of coping in a middle-aged community sample

Coping strategies, trajectories, and their associations with patient-reported outcomes among women with ovarian cancer

How coping mediates the effect of optimism on distress: a study of women with early stage breast cancer

Center for Disease Control and Prevention: Cases of Coronavirus Disease (COVID-19) in the U

The relative efficacy of avoidant and nonavoidant coping strategies: a meta-analysis

Assessing coping strategies: a theoretically based approach

The relationship between coping strategies and anxiety in women from families with familial breast-ovarian cancer in the absence of demonstrated mutations

Goal adjustment influence on psychological well-being following advanced breast cancer diagnosis

Stress and quality of life in breast cancer recurrence: moderation or mediation of coping?

Self-efficacy for Coping Moderates the Effects of Distress on Quality of Life in Palliative Cancer Care

Coping style and sleep quality in men with cancer

Bibliotherapy: Appraisal of Evidence for Patients Diagnosed With Cancer

Coping with the cancer experience. I. Developing an education and support programme for cancer patients and their significant others

Computer-mediated patient education: opportunities and challenges for supporting women with ovarian cancer

Uncertainty management intervention for older African American and caucasian longterm breast cancer survivors

Illness appraisal, religious coping, and psychological responses in men with advanced cancer

Religious coping is associated with the quality of life of patients with advanced cancer

The relationship of spiritual concerns to the quality of life of advanced cancer patients: preliminary findings

Negative religious coping as a correlate of suicidal ideation in patients with advanced cancer

What doesn't kill you makes you stronger": an ovarian cancer survivor survey

COVID-19 and Racial/Ethnic Disparities

Promoting health equity in the era of COVID-19

How Pandemics End. The New York

Acknowledgements: Charlene Thomas and Paul J. Christos were both partially supported by the following grant: Clinical and Translational Science Center at Weill Cornell Medical College (1-UL1-TR002384-01).