Description of the Problem
The severe acute respiratory syndrome coronavirus 2–associated disease, coronavirus disease 2019 (COVID-19), has rapidly spread globally and been declared a pandemic by the World Health Organization [1]. The COVID-19 pandemic has affected every aspect of health care, including the delivery of standard of care cancer screening and treatment. In addition, cancer itself and anticancer therapy may lead to a weakened immune system, further increasing the risk of COVID-19 infection and complications [2].
Breast cancer is the most common nonskin cancer among women in the United States. Given that social distancing is a primary means of reducing COVID-19 spread, during the initial peak of the pandemic, the Society of Breast Imaging recommended that facilities delay screening breast examinations [3]. Moreover, breast cancer has been considered a low-risk cancer [4], and thus, the American College of Surgeons guideline recommended postponing of such surgery if possible or performing the procedure at an ambulatory surgery center [4]. Although these clinical services have been resumed in several states, many states have reported increased rates of COVID-19 infection and suspended elective, nonurgent, and nonemergency procedures and screening services again. The goals of these recommendations are to protect patients and staff from exposure to the virus in the hospital setting, to conserve personal protective equipment, as well as to create hospital capacity to care for COVID-19 patients [5].
However, many patients are concerned about delayed breast cancer detection and treatment because the timing of these interventions impacts successful outcomes. Because of the implementation of social distancing, many patients have turned to online forums for support. Thus, we evaluated breast cancer patient response to COVID-19-related breast imaging and treatment delays via online forum posts to inform patient care and prioritize services most concerning to patients when preparing for the second wave. Breastcancer.org, one of the largest nonprofit US-based online breast cancer community, was utilized.
What We Did
We conducted a qualitative analysis of all posts under the COVID-19 forum on Breastcancer.org (https://community.breastcancer.org/forum/164) established on March 11, 2020, over a 6-week period until April 23, 2020. The COVID-19 forum is organized by topics, each with individual posts with the number of associated posts and views listed. The content of the topics and posts was analyzed over time and grouped by similar categories. We grouped the topics into the following nine categories: (1) stress and concerns about COVID-19, (2) self-cancellation of imaging and clinical visits, (3) diagnosis and treatment delays, (4) coping and support, (5) new surgical experiences, (6) work and financial changes, (7) COVID-19 susceptibility due to cancer, (8) educational information, and (9) health care changes. The number of topics, posts, and views was recorded for each category. The date of each post was also recorded. The total number of users posted on the COVID-19 forum, as well as for each category, was also recorded. Many users posted under several of these categories listed above.
Data analysis was performed using standard summary statistics, including counts and percentages. This analysis was performed using Microsoft Excel for Windows (Microsoft, Redmond, Washington).
The institutional research board has determined our study as nonhuman subject research, because the data does not include any individually identifiable information, and the posts were publicly accessible on an online forum.
Outcomes
In total, 45 topics including 678 posts from 192 users with 14,164 views were analyzed. Of the 678 posts, 16%, 26%, 21%, 15%, 15%, and 7% were posted in the first, second, third, fourth, fifth, and sixth week, respectively. Figure 1 shows the percentage of posts per week overtime from March 11, 2020, to April 23, 2020.
Fig 1.
Percentage of posts per week overtime from March 11, 2020, to April 23, 2020.
We grouped the topics into nine categories based on the content. Table 1 shows the number of topics, posts, views, and users posted in each category, as well as the date of the first post in each category.
Table 1.
The number of topics, posts, views, and users posted in each category and date of the first post in each category
| Category | Date of first post (month/date) | Number of topics (n = 45) | Number of posts (n = 678) | Number of users posted∗ (n = 192) | Number of views (n = 14,164) |
|---|---|---|---|---|---|
| Stress and concerns about COVID-19 | 3/11 | 5 (11%) | 202 (30%) | 63 (33%) | 5,269 (37%) |
| Self-cancellation of imaging and clinical visits | 3/15 | 2 (4%) | 56 (8%) | 35 (18%) | 1,118 (8%) |
| Diagnosis and treatment delays | 3/16 | 8 (18%) | 134 (20%) | 81 (42%) | 2,572 (18%) |
| Coping and support | 3/17 | 3 (7%) | 86 (13%) | 39 (20%) | 1,385 (10%) |
| New surgical experiences | 3/20 | 2 (4%) | 15 (2%) | 10 (5%) | 281 (2%) |
| Work and financial changes | 3/20 | 2 (4%) | 71 (11%) | 46 (24%) | 1,156 (8%) |
| Educational Information | 3/20 | 17 (38%) | 36 (5%) | 16 (8%) | 861 (6%) |
| COVID-19 susceptibility due to cancer | 3/21 | 4 (9%) | 50 (7%) | 28 (15%) | 1,182 (8%) |
| Health care changes | 4/15 | 2 (4%) | 28 (4%) | 23 (12%) | 340 (3%) |
COVID-19 = coronavirus disease 2019.
Many users posted in multiple categories.
Figure 2 shows the percentage of posts in each category, which is listed by date of the first post. Of 678 posts, 30% posts authored by 63 users expressed stress and concerns about COVID-19, 8% posts authored by 35 users discussed self-cancelation of imaging and clinical visits, 19% posts authored by 81 users concerned about diagnosis and treatment delays, 13% posts authored by 39 users focused on coping and support, 2% posts authored by 10 users shared new surgical experiences, 11% posts authored by 46 users addressed work and financial changes, 5% posts authored by 16 users shared educational information, 8% posts authored by 28 users worried about COVID-19 susceptibility due to cancer, and 4% posts authored by 23 users discussed health care changes. Of the 17 topics grouped under information and educational materials, 13 (76%) were initiated by the forum-employed moderator to address various concerns posted. Over this 6-week period, there was a shift of posts from initial concerns and stress to more focused on coping and sharing experiences.
Fig 2.
Percentage of coronavirus disease 2019 (COVID-19)-related posts for each category listed by date of first post on Breastcancer.org (n = 678).
Among 35 users who posted under the category of self-cancellation of imaging and clinical visits, the most common visit that they debated to cancel was mammography (n = 11), followed by Goserelin and Leuprolide injection (n = 3), radiation (n = 2), and chemotherapy (n = 1). The 81 users who posted regarding concerns of diagnosis and treatment delays were most concerned about delays of mastectomy, lumpectomy, re-excision and axillary dissection for cancer (n = 17), reconstruction (n = 9), and excisional biopsy for diagnosis and high-risk lesion (n = 3), and radiation (n = 2) but did not report delays of diagnostic imaging or core-needle biopsy. Among the 23 users posted regarding health care changes, patients favored telemedicine (n = 5) and preferred to keep them.
The online forum provides a great platform for breast cancer patients to cope with the worries and loneliness. Our analysis showed that the number of posts peaked during March 19, 2020, to March 25, 2020, when increasingly nonurgent visits and elective procedures were canceled or delayed in various states following the Centers for Disease Control and Prevention guideline [6].
In addition to stress and concerns about COVID-19, patients were most concerned about breast cancer diagnosis and treatment delays, especially delays of various breast cancer surgeries. Patients did not report delays of diagnostic imaging or core-needle biopsy. This is consistent with the recommendations that urgent diagnostic imaging and biopsies should proceed as usual [7]. Our findings suggested the importance of prioritizing presurgical imaging evaluation and biopsy, as well as shifting to non–wire localization when possible so that patients can be rapidly scheduled as operating room availability opens up, with the goal of addressing patient concerns.
In our study, patients discussed self-cancellation of imaging and clinical visits. The Society of Breast Imaging recommended delaying screening during the pandemic to promote social distancing [3]. In addition, guidelines have been published to help physicians make risk-benefit decisions weighing concerns that treatment of cancer may increase the risk of COVID-19 and worsening its complications against the risk that delay in treatment may compromise oncologic outcomes [5]. Patients’ debate of self-cancellation highlights the importance of implementing safety measures to reassure patients when providing screening and clinical services, such as spreading out the appointments and having separate waiting areas to implement social distancing.
Patients in our analysis also expressed interests to keep the telemedicine visits postpandemic. The COVID-19 pandemic has driven rapid expansion of telemedicine use for urgent and nonurgent health care visits, which could transform the way physicians provide care going forward [8]. In breast imaging, virtual consult also has been used to deliver the imaging and biopsy results while implementing social distancing [7].
Limitations
First, we evaluated breast cancer patients’ response to the imaging and treatment delays, because they may be more susceptible to COVID-19 infection and mortality, and the delays may have a great impact on them. We did not use multiple forums to gain more insight on the delay of mammography in the general population. Second, patients posted on the online forum may not represent all breast cancer patients whose care was affected by the pandemic. Third, the locations and states of the forum users were not available to analyze the impact of the pandemic on various geographic regions at different times. Finally, although we analyzed patients’ concerns regarding the COVID-19-related breast imaging and treatment delays, such perceptions may not indicate the actual clinical importance of the services. All medical decisions must be carefully weighed taking into account all parameters and be balanced for the safety of individual patients as well as for the community.
Footnotes
The authors state that they have no conflict of interest related to the material discussed in this article. Dr Mango reports grants from National Institutes of Health-National Cancer Institute Cancer Center Support Grant P30 CA008748, during the conduct of the study; other from Koios Medical Inc, outside the submitted work. Dr Zhang, Dr Ojutiku, and Dr Mango are nonpartner, non–partnership track employees.
References
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