We identified a single hotspot of approximately 1.5 km radius in Cuyahoga County that lies along the border of Cleveland and one of its inner ring suburbs (further location details are withheld to protect subject privacy). The cluster contained 54 women diagnosed with breast cancer from 2010-2015, of whom 8 received treatment in <30 days, 28 were treated in 30-60 days, and 18 waited >60 days (compared to expected counts of 24, 22, and 8, respectively, based on county-wide experience; p-value 0.064). The zip code which overlaps substantially with the identified hotspot features a population that is 96% African American and 3% Hispanic, with 52% of households living below the Federal Poverty Line, and a median household income of $14,603.(17)
From our recruiting network, we identified 16 individuals for semi-structured interviews. All participants were female. Eight were breast cancer survivors, two were former caretakers of breast cancer survivors, and seven were professionals caring for or otherwise serving women with breast cancer in the community. One participant fell into the categories of both survivor and professional. Table 1 describes the participants.
Table 1
Description of Participants
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N=16
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Female
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16 (100%)
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Race / Ethnicity
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Non-Hispanic Black
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11 (69%)
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Non-Hispanic White
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4 (25%)
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Hispanic White
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1 (5%)
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Mean/Median Age
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57 / 60
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Role*
|
|
Survivor
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8 (50%)
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Caregiver of patient/survivor
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2 (13%)
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Nursing
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2 (13%)
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Social work
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2 (13%)
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Health system community outreach
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2 (10%)
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Public health
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1 (6%)
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* Percentages sum to >100% because one participant reported dual roles as a survivor and professional. |
Barriers to and facilitators of timely treatment fell into three primary themes: informational, intrapersonal, and logistical. Those specific barriers/facilitators that fell under each of these main themes are described below.
Informational barriers
Inaccurate information, a lack of practical information about processes of care, and time spent seeking additional information can each contribute to treatment delay through different mechanisms.
Erroneous beliefs – A barrier mentioned by both professional and survivor participants was erroneous beliefs about treatment and about cancer in general. This included beliefs that surgical treatment of cancer can lead to spread of the disease to other parts of the body. One participant described the beliefs of some in her community as follows: "Well, once they cut you open it's going to spread." Another survivor, who had experienced another type of cancer prior to their breast cancer diagnosis shared a similarly erroneous and fatalistic belief about the survivability of cancer: “I used to believe that cancer was just an automatic death sentence.”
At the other extreme, one professional mentioned having multiple patients who do not believe that cancer is a real disease.
“We've had patients who don't believe in cancer. We have some almost conspiracy theories about whether it's real or maybe cultural beliefs that contradict sort of the medical facts that we present.” (Professional)
Lack of information about process – Some participants described a lack of clear information about the steps involved in starting and maintaining treatment as a barrier. This is typified by the following quote from one participant:
“Lack of information or communication can [make it] difficult for people to get their treatment because if you don't know, this is new to you and you don't know about something or no one is giving you information to help ease your mind of what you’re about to go through and why and what for” (Survivor)
Information Seeking – Some participants described seeking information about treatment from other providers, both traditional and alternative, as a source of treatment delay. This was mentioned by multiple professional participants as a barrier that often negatively impacts patients. One professional participant, after recounting the case of a patient who delayed traditional treatment in order to pursue an alternative therapy, stated, “People who want alternative therapy are going to do that. So many people then come back a year later, two years later with big tumor.”
On the other hand, one survivor who sought a second opinion out of concern over the impact of cancer treatment on their comorbid conditions reported the benefit of this additional step, and the subsequent change in treatment, without citing any negative impacts stemming from treatment delay.
Intrapersonal barriers
Misgivings stemming from mistrust and fear, as well as sometimes powerful denial, were cited by participants as intrapersonal barriers to timely treatment initiation.
Mistrust – Survivor, caregiver, and professional participants described patient mistrust as a barrier to timely treatment. This mistrust encompassed not only the processes within the healthcare system, but also the efficacy of the system generally, as reflected by the comments of one participant who described “not trusting what the outcome’s going to be, doubting” (Caregiver). Two participants described a perception among female African American patients that doctors and nurses were not motivated to help them and were not making decisions in their best interests. For example, one shared the following:
“Sometimes if your insurance is not that good or if the people like the doctors or the nurses that work with the doctors are not really motivated to help you, especially if you're poor and Black, then you do slip through the cracks.“ (Professional/Survivor)
Fear – Beyond fear of pain and negative health outcomes generally, participants also described fear of disfigurement, and feeling less than whole after mastectomy, as a common barrier to timely treatment initiation.
“This particular lady, we were not going to take off her breast because that would not make her whole […] and she was not going to do that.” (Professional)
Some women cited fear that disfigurement would lead to abandonment by their significant other.
“But some people I personally know that put off the surgery or decided, ‘Even though this cancer is aggressive, I'm not going to have a mastectomy because I'm worried about my husband leaving me.’" (Professional/Survivor)
Denial – Denial was cited by survivor and caregiver participants as another barrier to timely treatment initiation. One comment speaks to the power of denial in decision making.
“I really just acted as though it was not me. I didn’t act like it. I really believed that it was not me. I thought that they had put my name with somebody else's test. And that wasn't true. I just carried on like I wasn't in any pain.” (Survivor)
Finally, some professionals also mentioned mental health and substance abuse challenges as compounding factors which contributed to broadly challenging psychosocial contexts for patients needing to initiate treatment.
Logistical barriers
Logistical barriers may be thought of as the final hurdles to be cleared after a woman has overcome any informational or intrapersonal barriers affecting their willingness to receive treatment. Our respondents reported the following types of logistical barriers to receiving timely treatment.
Transportation – Transportation challenges were cited by professional and survivor participants as a significant barrier to receiving treatment.
“…for somebody who don’t have transportation, that can be a barrier. Some people who don’t drive freeways, that can be a barrier, a reason why somebody would put off mammograms or put off going to get treatment because it may be too far for them.” (Survivor)
Two professional participants also cited the cost of parking as a barrier to both initiation of and continued adherence to treatment.
Costs related to treatment - Another barrier stemmed from the cost of receiving treatment. Beyond the direct costs of treatment (which may be fully covered under Medicaid), the lost wages and possible job loss resulting from missed work, transportation and parking costs, and the cost of requisite child care can constitute seemingly insurmountable obstacles to treatment—as well as enormous emotional stress. One participant summed up the choice that some patients are forced to make this way:
“Some people just stop because, ‘Well, can I keep a roof over my head, or can I keep my chemo?’” (Professional)
Prioritization of other responsibilities – An indirect, but no less significant, barrier can be the caretaking responsibilities of some patients. Multiple professionals mentioned child care responsibilities, coupled with the inability to afford professional child care, as substantial practical barriers to timely treatment initiation and adherence.
Informational facilitators
Objective and understandable information – Survivors noted the value of information detailing their planned course of treatment and what they should expect at each stage. Their comments suggest the utility of clear information in reducing fear and clarifying processes of care.
“Being able to have pamphlets and stuff to read to help me because all this was new to me.” (Survivor)
Additionally, a comment from one participant describing a previous bout with cancer points to the importance of clarity around care processes for boosting self-efficacy.
“I knew how important it was to just follow through and do everything that I needed to do step by step if I wanted to live” (Survivor)
Intrapersonal facilitators
Faith - Faith was commonly mentioned by professionals and survivors as a mechanism for coping with the difficulties of receiving a cancer diagnosis and of treatment generally. As such, faith can be viewed as a facilitator of not only timely treatment initiation but also adherence. In recounting her previous bout with another type of cancer, one survivor shared the following:
“When I first found out […] I was ready to die. And a friend of mine said that, ‘You've talked to everybody about this cancer. Have you talked to God?’. And I said, ‘No’. So, I went to the alter, and I prayed. When I got up, I didn't have any more worries.” (Survivor)
Logistical facilitators
Logistical facilitators identified tended to be financial in nature.
Financial counseling – A participant who was both a survivor and a professional pointed to the importance of financial counselors based at hospitals or community organizations in the treatment journeys of many women.
Medicaid enrollment – Numerous professionals described the importance of Medicaid in assuring access to treatment for many women.
Oh my God. I don't even know how people-- if you don't have good hospitalization, and you're not poor enough to qualify for Medicaid, I do not know how you're handling the 20% [Medicare coinsurance]
One professional participant also described the Breast and Cervical Cancer Project (BCCP), implemented through the Centers for Disease Control and Prevention (CDC) National Breast and Cervical Cancer Early Detection Program (NBCCEDP)(18), as a critical link for enrolling uninsured women with breast cancer in Medicaid.
Transportation assistance – A few professionals also mentioned resources to assist with transportation-related barriers, including parking validation or arranging for free transportation.
The importance of patient navigation and support networks
Numerous participants described the critical role of patient navigators or support networks who functioned to assist patients with overcoming multiple barriers to treatment and provided access to facilitating factors.
Patient navigators – Patient navigators (including individuals trained in nursing, social work, or other fields) were cited by numerous participants as essential for overcoming informational and logistical barriers to care in particular.
When asked specifically why she thinks some women face delays in starting treatment, one survivor highlighted the importance of navigators in overcoming informational barriers:
“I think it's lack of information, just figuring out the steps. I think that's why they have breast nurse navigators.” (Survivor)
One professional, whose duties included serving as a patient navigator, shared the following with regard to assisting patients facing logistical barriers:
“We have patients who can't imagine how they're going to take time off from work, when they have that really fixed income, or who don’t have anyone to watch their children, who just can't kind of figure out the logistics. And that's where we try to be really helpful in doing some problem solving with them and helping connect them with resources.” (Professional)
Describing a prototypical scenario of a newly diagnosed breast cancer patient, one professional who was also a survivor said
"’Well, let's see when we have another opening. It's three months from now.’ That's where a patient navigator comes in and like, ‘No. This is a cancer diagnosis. She can't wait another three months to get in to see somebody to start the testing and stuff.’" (Professional/Survivor)
Support Networks – Nearly ubiquitous in our interviews was the centrality of support networks as a resource for overcoming barriers to treatment initiation and adherence. These support networks might be formal, such as support groups sponsored by hospitals or community agencies, or informal, such as family, friends, or faith community members. Participants’ comments suggested that support networks can help mitigate essentially every type of barrier described. Support groups can reduce informational barriers in particular by providing important process information or correcting misinformation. Both formal and informal support networks can help patients cope with the mistrust, denial or fear which can inhibit engagement with treatment. Similarly, they can provide practical support—through connection with programs or direct assistance—to overcome transportation, financial, or other logistical barriers. While one survivor shared that “Talking to other people that have been through this, that have survived it” empowered her during treatment, more comments highlighted the centrality of less formal support networks formed before cancer diagnosis. One professional’s statement encompassed the sentiments and experiences of multiple survivors:
“Well, I think probably the number one asset that kind of helps patients cope is probably support, so having that support network whether it be family, friends. For a lot of people, that's their faith, their church support or their synagogue support or whatever they worship. So often, it's the support network that really helps patients cope and get through it. And that support network is often providing emotional support and sometimes it's financial support. I mean, often, it's financial support, actually, for our patients on a fixed income. It's not just us connecting them with the resources.” (Professional)