People with breast cancer often have unmet emotional, financial needs
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Many women with breast cancer struggle with unmet emotional or financial needs, according to research presented at American College of Surgeons Clinical Congress.
These challenges — revealed during an analysis of posts on the social media platform Reddit — persist during treatment and well into survivorship, findings of two poster presentations showed.
A research team led by Sarah Tevis, MD, FACS, associate professor of surgery at University of Colorado Anschutz Medical Campus, evaluated 700 posts from Reddit users.
The anonymous posts came from users seeking and providing information on breast cancer.
The posts most frequently involved advice (22%), affirmation (21%), venting (20%), solidarity (13%) and motivation (11%), according to a press release. Researchers also identified posts in which users sought advice on coping mechanisms (18%), resources (11%) and diagnosis/prognosis (7%).
“Coping with a cancer diagnosis and the psychosocial and physical side effects that come with it can be extremely difficult and taxing emotionally and financially,” investigator Jessie G. Jiang, a fourth-year medical student at University of Colorado Anschutz Medical Campus, told Healio. “We would be failing our patients if we don’t address the findings in our study, such as anxiety impacting psychosocial well-being.”
Healio spoke with Jiang about the motivation for these studies, the implications of the findings, and the steps that can be taken to address patients’ unmet needs.
Healio: What prompted these studies?
Jiang: One of our goals in the Patient Aligned Care Throughout Treatment lab is to develop innovative resources to better support patients experiencing psychosocial and sexual health side effects of breast cancer treatment. Several of our projects have used content analysis to study survey results, as it is a systematic way to analyze survey data and extract themes that represent how diagnosis and treatment impacts patients’ lives.
We turned our attention to Reddit as a source of data because it is one of the predominant online support groups for breast cancer survivors with over 27,000 active members. It is open access and fully anonymous, making it a valuable source of data to help us understand what topics patients with breast cancer are really talking about. Reddit minimizes the selection bias that could be present in in-person support groups, and it offers a safe space for members to post anonymously.
We were interested to see how the content discussed on Reddit aligns with BREAST-Q, which is the most rigorously developed patient-reported outcome (PRO) measure. As we began coding excerpts from Reddit posts, we noticed many posts were simply a discussion of how helpful the r/breastcancer online community [had been], which opened doors for a second study on the function of the Reddit community among breast cancer survivors.
Healio: How did you conduct the studies and what did you find?
Jiang: We sorted all posts on the r/breastcancer forum by “top” posts and extracted the top 1,000 in the last year for content analysis. Original post content was analyzed only; responses and comments were excluded. Thematic coding was performed by five trained coders using the same codebook guide. Deductive thematic coding was used to establish initial themes using the BREAST-Q domains. Inductive thematic coding was used to establish other emerging themes. The BREAST-Q domains include psychosocial well-being, physical well-being, sexual well-being, satisfaction with breasts, satisfaction with care, and satisfaction with outcome. Similar methods were used for the second study on the function of the Reddit community.
In the first study — which focused on BREAST-Q domains — the most represented domains among Reddit posts were psychosocial well-being, physical well-being and satisfaction with care. Top themes that emerged beyond these domains included diagnosis, completion of treatment and family stressors. Overall, the most significant finding was that patients’ psychosocial well-being is most affected by anxiety.
In our second study, which focused on function of the Reddit community for breast cancer survivors, posts on the r/breast cancer forum were most used for venting and discussions on advice and patients’ diagnosis. In posts suggesting the positive impact of the Reddit community, patients with breast cancer are most commonly seeking or providing advice, solidarity and encouragement.
Healio: What potential impact could this lack of support have on patients’ emotional and financial well-being?
Jiang: Breast cancer treatment is not limited to surgery, chemotherapy, hormone therapy and radiation. It involves providing the necessary resources to support patients’ mental health, finances, child care and transportation. Anxiety can stem from a multitude of factors, and providers should be more aware of ways to address it. Further, our second study demonstrates that many breast cancer survivors really desire a safe place to vent and feel heard by others who understand or have lived their experience. If these aspects of care aren’t addressed, breast cancer survivors could have a much more difficult time coping and may even miss out on adequate access to the treatment they deserve.
Healio: What steps can be taken to address these unmet needs?
Jiang: More support groups or resources could be provided in clinic to address the most discussed topics and themes — specifically, resources that patients can access in an anonymous fashion. Providers could undergo more training on how to bring up difficult conversations, assess patients’ psychosocial well-being, and provide any necessary interventions that may have previously been overlooked. Breast cancer centers should provide patients with access to therapists and social work to address sources of anxiety not only related to their diagnosis and treatment but also factors beyond that.
Healio: What are the potential implications of these findings?
Jiang: One interesting aspect of our finding was that over 10% of posts discuss completion of treatment or life in remission. This implies that breast cancer survivors have continued needs after completion of treatment and could still benefit from support. Even in the phase of survivorship, patients experience anxiety and fear of recurrence. [This is] something that we are beginning to study.
Healio: What is next in your research on this?
Jiang: Future work may include using meaning extraction method to generate more specific themes and application of findings to in-person support groups at our institution. We may also consider implementing interventions in some of these areas of need, such as more mental health or counseling services, and then survey patients to gauge the utility of these interventions.
References:
- American College of Surgeons. Emotional and financial concerns of breast cancer patients are often unmet (press release). Available at: https://www.facs.org/media-center/press-releases/2024/emotional-and-financial-concerns-of-breast-cancer-patients-are-often-unmet/. Published Oct. 18, 2024. Accessed Nov. 5, 2024.
- Jiang J, et al. Identifying resource needs of patients with breast cancer by examining alignment of Reddit post content with BREAST-Q domains. Presented at American College of Surgeons Clinical Congress, Oct. 19-22, 2024; San Francisco.
- Jiang J, et al. Reddit: a crucial community for breast cancer survivors and an innovative tool for patient surveying in breast cancer research. Presented at American College of Surgeons Clinical Congress; Oct. 19-22, 2024; San Francisco.
For more information:
Jessie G. Jiang can be reached at jessie.jiang@cuanschutz.edu.
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