Although breast cancer is the most common non-skin cancer diagnosed in women, finding support during treatment and through survivorship can be incredibly challenging. An analysis of posts from breast cancer patients on the popular online forum Reddit found that many breast cancer patients often struggle with several unmet emotional and financial concerns during treatment and long after.
The research is being presented as two poster presentations at the American College of Surgeons (ACS) Clinical Congress 2024 in San Francisco, California.
As we thought more about quality of life during breast cancer treatment, we wanted to know what patients are talking about and interested in. We've done some work in focus groups, but we thought Reddit would be a great source to access a large volume of patient thoughts. Reddit is unique because posts are anonymous; it's not the health care team asking the patient questions, but rather what they're talking about with other patients."
Sarah Tevis, MD, FACS, senior author of the study and associate professor of surgery, University of Colorado Anschutz Medical Campus in Denver, Colorado
The research team analyzed 700 posts from Reddit users, including users seeking information as well as providing information to other users. Most often, users posted content on advice (22%), affirmation (21%), venting (20%), solidarity (13%), and motivation (11%). Other themes that emerged included users seeking advice on coping mechanisms (18%), resources (11%), and diagnosis/prognosis (7%). Many users expressed positive sentiments and gratitude toward the Reddit community.
The study demonstrates the importance of providing a safe space for breast cancer patients and survivors to seek advice, vent, and find solidarity; the findings also support the demand for increased access to education and workshops on coping, treatment decision-making, and understanding diagnoses and prognoses, the authors wrote.
"The most striking thing to me was the outpouring of gratitude and love that users had for the Reddit community. Almost half of the posts that we analyzed alluded to some aspect of gratitude or appreciation for the group even if it wasn't the focus of their original post," said Jessie G. Jiang, first author of the studies and a fourth-year medical student at the University of Colorado Anschutz Medical Campus. "I think our studies demonstrate that there's still a huge unmet need concerning the general psychosocial well-being of breast cancer patients."
In addition to analyzing Reddit posts, another study led by the research team investigated if the information shared in Reddit posts aligns with BREAST-Q, a validated tool used to measure how patients view the outcomes of their surgery.
Of 700 Reddit posts analyzed, the authors found that users consistently expressed concerns about their emotional well-being (314 posts), diagnosis (77 posts), physical well-being (65 posts), family and financial stressors (56 posts), and life after treatment (21 posts). Users also expressed concerns regarding finding support following diagnosis, during remission, or with familial and financial struggles.
Many of these concerns differ from the central focus of the BREAST-Q, which largely assesses patient satisfaction with their breasts and surgical outcomes. The results suggest that breast cancer patients would benefit from increased screening and support that more directly addresses their overall well-being, the authors said.
"These studies were an interesting way to understand what breast cancer patients are worried about and what is important to them," Dr. Tevis said. "I think what we learn can be applied to many different areas of research when thinking about how to improve breast cancer care and support."
Study co-authors are Trisha Agarwal, BS; Monica Adams, MA; Madeline Huey, MD; Erin Baurle, PsyD; and Kristin E. Rojas, MD, FACS.
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