Barriers and facilitators to breast cancer screening among high-risk women: A qualitative study

Abstract

Purpose:

Women with greater than 20–25% lifetime breast cancer risk are recommended to have breast cancer screening with annual mammogram and supplemental breast MRI. However, few women follow these screening recommendations. The objective of this study was to identify barriers and facilitators of screening among women at high risk for breast cancer, guided by the Health Services Utilization Model (HSUM).

Methods:

Unaffected high-risk women (N=63) completed semi-structured qualitative interviews exploring their experiences with breast cancer screening. Interviews were audio recorded, transcribed verbatim, and analyzed using a combined deductive and inductive approach.

Results:

Most participants (84%) had received a screening mammogram; fewer (33%) had received a screening breast MRI. Only 14% had received neither screening. In line with the HSUM, qualitative analysis identified predisposing factors, enabling factors, and need factors associated with receipt of breast cancer screening. Enabling factors – including financial burden, logistic barriers, social support, and care coordination – were most frequently discussed. Predisposing factors included knowledge, health beliefs, and self-advocacy. Need factors included healthcare provider recommendation, family history of breast cancer, and personal medical history. Although HSUM themes were consistent for both mammography and breast MRI, participants did highlight several important differences in barriers and facilitators between the two screening modalities.

Conclusion:

Barriers and enabling factors associated with supplemental screening for high-risk women represent possible intervention targets. Future research is needed to develop and test multilevel interventions targeting these factors, with the ultimate goal of increasing access to supplemental screening for high-risk women.

Introduction

An estimated 6–15% of women are at high (20–25% or greater) lifetime risk for breast cancer based on personal health factors, family history, or pathogenic genetic mutations (e.g., BRCA) [1,2]. For high-risk women, national guidelines recommend annual mammography and supplemental breast magnetic resonance imaging (MRI) [3–5]. However, few high-risk women follow this recommended screening schedule. From 2014–2018, 42% of high-risk women underwent annual screening mammography [6]. Rates of screening breast MRI are even lower; from 2005–2016, approximately 20% of high-risk women received a screening breast MRI [7,8]. Low uptake of breast cancer screening among high-risk women represents a critical gap in guideline concordant care that requires attention.

Although there is a robust literature on barriers to breast cancer screening [9–15], relatively few studies have focused specifically on high-risk populations [16–18]. The limited existing research demonstrates that breast cancer screening in high-risk women is associated with breast cancer knowledge, perceived breast cancer risk, cancer worry, income, social support, and provider recommendation for screening [16,18]. Given the many interacting factors affecting their receipt of breast cancer screening, qualitative data may help to elucidate the complex decision-making processes of high-risk women.

Therefore, guided by the Health Services Utilization Model (HSUM) [19], we utilized qualitative interviews with high-risk women (N=63) to gain an in-depth understanding of barriers and facilitators of breast cancer screening in this population. The HSUM proposes that health-related service use is a function of an individual’s predisposing factors (characteristics of individuals that affect their likelihood of pursuing health services), enabling factors (logistical aspects of obtaining care), and perceived need (belief that the health problem is significant enough to warrant intervention). Taken together, these three elements either facilitate or hinder individuals’ utilization of health services. Thus, this study qualitatively explored predisposing, enabling, and need factors associated with breast cancer screening for high-risk women.

Methods

Procedures and Participants

All procedures were approved by the Institutional Review Boards at Moffitt Cancer Center (Advarra IRB #00000971) and Georgetown University (IRB #00002479). Participants were recruited from a cohort of high-risk women who had previously participated in a cross-sectional survey study [18,20]. Eligibility criteria and recruitment procedures have been previously published. Briefly, eligible participants were female; age 25–85 years; English-speaking; living in the US; and high-risk for breast cancer per American College of Radiology criteria [3]. Survey participants indicated their willingness to be contacted for a follow-up interview. We contacted interested individuals via a recruitment email which included information about the study and a link to a web-based consent form. Individuals who completed the consent form were subsequently scheduled for an interview.

During semi-structured qualitative interviews, participants were asked to describe their experiences with breast cancer screening (see Online Resource 1 for the interview guide). They were also queried regarding predisposing factors, enabling factors, and perceived need for breast cancer screening. The principal investigator (CCC) conducted all interviews. She did not have a relationship with the interviewees prior to their study participation. In terms of positionality [21], the interviewer has extensive professional and personal experience with breast cancer screening for high-risk women. Her interviewing may have been affected by her family history of breast cancer and elevated estimated lifetime breast cancer risk. Potential bias was managed through post-interview debriefing with a colleague (SCO).

Interviews were conducted via a web-based video platform from November 2020 to March 2021 and lasted 37 minutes on average (range: 18–56 minutes). Interviews were audio-recorded and transcribed verbatim. Upon completion of the interview, participants received a $20 gift card.

Data Analysis

We utilized a combined deductive and inductive qualitative data analysis approach [22]. In anticipation that certain core concepts exist in the data, we developed a “start list” of expected themes [23–25], broadly representing HSUM constructs. Then, members of the study team (CCC, AA, JDR) reviewed transcripts and developed a detailed codebook consisting of data-driven codes from the raw data [26]. Codes represented specific sub-themes within the broad HSUM domains (see Table 1).

Table 1.

Relationship between theory domains and data-driven themes and codes.

HSUM Factor	Themes	Codes
Predisposing	Knowledge is a necessary precondition for getting screened.	• Comfort with navigating the medical system • Knowledge/awareness
	Individuals’ health beliefs affect if/how they prioritize breast cancer screening.	• Being proactive • Knowledge is power
	Participants emphasized the importance of self-advocacy for high-risk women.	• Information seeking tendency • Self-advocacy
Enabling	Breast cancer screening is contingent on potential financial burden.	• Insurance coverage • Out-of-pocket costs
	Logistic challenges make it difficult to get breast cancer screening.	• Accessibility • Childcare • Competing demands • Scheduling • Time constraints
	Having a support system makes it easier to get breast cancer screening.	• Accountability/encouragement • Practical support
	Desire for providers and systems to work together and share information.	• Care coordination • Lack of coordination • “Point person”
Perceived Need	Healthcare providers can influence their patients’ screening behaviors.	• Patient-provider relationship • Provider knowledge • Provider recommendation • Trust in physician
	Medical history often underlies motivation for breast cancer screening.	• Family history • History of abnormal screening • Non-cancer breast disease • Pathogenic genetic mutations

The coding team consisted of ten members. We assessed intercoder reliability across repeated rounds of coding [27]. Transcripts were independently coded by two raters until satisfactory reliability (Cohen’s κ ≥0.70) was achieved [28]. This occurred after 13 transcripts (21%) were independently coded. For independently coded transcripts, coding disagreements were resolved through discussion with a third rater until consensus was reached. The remaining 50 transcripts were each coded by a single rater. Coding was conducted using Dedoose.

Results

Participant Demographics

Of 135 individuals who had previously expressed interest in the interview, 69 (51%) responded to our email and completed the electronic consent form (Figure 1). Six were lost to follow-up during the interview scheduling process, resulting in a final cohort of N=63.

Figure 1.

Study flow.

See Table 2 for a full description of the cohort. The average participant age was 47 years (range: 26–76). Participants were primarily White (89%), non-Hispanic (95%), working full-time (51%), with a college degree or greater (84%) and an annual household income greater than $75,000 (56%). Most participants (84%) had ever received a screening mammogram; fewer (33%) had ever received a screening breast MRI. A minority of participants (14%) had never received a screening mammogram or a screening breast MRI.

Table 2.

Participant demographic and clinical characteristics (N=63).

Demographic Characteristics
Age (M, SD)		47.4 (12.0)
Racea (n, %)	American Indian/Alaska Native	1 (2%)
	Asian	1 (2%)
	Black/African American	6 (10%)
	White	56 (89%)
	Other	1 (2%)
Ethnicity (n, %)	Hispanic/Latina	3 (5%)
	Not Hispanic/Latina	60 (95%)
Education (n, %)	High school degree	2 (3%)
	Some college/vocational training	8 (13%)
	College degree	32 (51%)
	Post-graduate degree	21 (33%)
Employment status (n, %)	Working full-time	32 (51%)
	Working part-time	11 (18%)
	Retired	5 (8%)
	Homemaker	5 (8%)
	Student	4 (6%)
	Unemployed	4 (6%)
	Unable to work	2 (3%)
Household income (n, %)	≤$24,999	3 (5%)
	$25,000-$49,999	10 (16%)
	$50,000-$74,999	8 (13%)
	$75,000-$99,999	11 (18%)
	≥$100,000	24 (38%)
	Missing	7 (11%)
Health insurance type (n, %)	Private	49 (78%)
	Public (e.g., Medicare, Medicaid)	9 (14%)
	Military/Veterans healthcare	2 (3%)
	None	3 (5%)
Clinical Characteristics
Breast cancer risk factorsa (n, %)	Pathogenic mutation carrierb	20 (32%)
	FDR with pathogenic mutation	21 (33%)
	BCRAT score ≥20%	22 (35%)
Prior breast cancer screening (n, %)	Mammogram + breast MRI	20 (32%)
	Mammogram only	33 (52%)
	Breast MRI only	1 (2%)
	None	9 (14%)

FDR = first degree relative; BCRAT = Breast Cancer Risk Assessment Tool

^aAs participants could select more than one, does not total 100%.

^bIncluded pathogenic variants in BRCA1, BRCA2, ATM, and CHEK2.

Themes

Qualitative analysis guided by the HSUM identified predisposing, enabling, and need factors affecting receipt of breast cancer screening. Table 3 provides exemplar quotes from participants for each theme.

Table 3.

Representative quotes illustrating major themes.

Theme 1: Knowledge is a necessary precondition for getting screened.
“In order to get screening, first, you have to know that you need to get screening.” (#39, prior mammogram only) “If you’re less initiated into the medical world than I am, it would certainly be a barrier.” (#12, no prior screening) “I’m educated, but I’m still unsure about what I’m supposed to do. I’ve been working in the healthcare field all my life, but I’m still not sure what’s standard of care.” (#56, prior mammogram + MRI)

Theme 2: Individuals’ health beliefs affect if/how they prioritize breast cancer screening.
“I think it’s better to be proactive than reactive with your health.” (#30, prior mammogram only) “Fear is the biggest motivator, and fear is the biggest obstacle. Some people want to know and take care of it. Some people just don’t want to hear it.” (#123, prior mammogram only) “If I was sick, or if there was something wrong, or if I’m not feeling good, I would do what they recommended. But the preventative stuff is just harder.” (#75, prior mammogram + MRI)

Theme 3: Participants emphasized the importance of self-advocacy for high-risk women.
“You have to advocate for yourself. No one’s gonna hold your hand.” (#128, prior mammogram only) “I was the one that asked about screening because of my history. I don’t think my doctor suggested it, I asked if I could start it.” (#66, prior mammogram only) “I want all the options and all the latest research so I can make more intelligent decisions about how to proceed. I try to make the most informed decisions that I can.” (#46, prior mammogram + MRI)

Theme 4: Breast cancer screening is contingent on potential financial burden.
“It’s not that I don’t want to get screened. It’s that I can’t. Insurance won’t cover it.” (#110, prior mammogram + MRI) “The cost [of an MRI] is outrageous. It’s basically having to choose between my long-term health or my basic survival needs for today. Like, my child needs to eat. So, I would much rather just do what I can afford and not stress myself out about getting an MRI.” (#7, prior mammogram + MRI) “I switched insurances and now I have a $10,000 deductible. So, that plays into my decision. If you’re choosing between spending thousands of dollars on breast cancer screening versus food to eat, or a roof over your head… I mean, you gotta have priorities.” (#75, prior mammogram + MRI) “I think people are scared to [get screened] when they don’t have insurance because if it comes back that you have cancer, what are you going to do?” (#127, no prior screening)

Theme 5: Logistic challenges make it difficult to get breast cancer screening.
“I had my first mammogram at 39, and then I didn’t get another one for 20 years. I think it was not caring, priority juggling, family stuff. I just didn’t care enough to prioritize it.” (#134, prior mammogram only) “I’m lucky. I live in an area with a ridiculous amount of healthcare options. There’s four MRI places within 20 minutes of me. I have an overabundance of access. If you didn’t live in an area with such a good healthcare system, that could be a barrier.” (#8, prior mammogram + MRI) “I get reminders for my mammogram, but I never get a reminder for my MRI. It’s something I have to monitor. I’ve had issues where I call to make the appointment, and they tell me that it hasn’t been ordered. That’s been very frustrating. Like, I don’t really want to get this test in the first place, and now you’re making it really hard for me to schedule it.” (#13, prior mammogram + MRI) “The follow-up or the scheduling rests a lot with you. The doctor can tell you that you need to go get screening, but they’re not following up with you. It’s on you, mainly because they know it’s your decision to make that [appointment].” (#131, prior mammogram + MRI)

Theme 6: Having a support system makes it easier to get breast cancer screening.
“My mom had breast cancer, and she’s very concerned about my sister and me. She’s definitely pushing [me to get screening].” (#12, no prior screening) “Two of my closest friends are high risk for breast cancer. They’re on a similar rotation of MRI and mammogram every six months. I think that makes it easier for me to have a peer group… we can lean on each other. They get it and we can support each other.” (#60, prior mammogram only) “My sister and I are very close. But honestly, if I didn’t get a mammogram for five years and didn’t say anything, she wouldn’t notice. There’s really nobody that’s checking on me for this. It’s completely on my shoulders.” (#46, prior mammogram only) “I don’t talk to my family or friends about this. It’s too depressing.” (#32, prior mammogram + MRI)

Theme 7: Desire for providers and systems to work together and share information.
“I feel like I have a team. A little team, and they don’t necessarily work together. They’re in the same hospital system. I think they’re doing the best they can.” (Participant #60, prior mammogram only) “I was seeing lots of doctors. I saw an oncologist. I saw my regular doctor. I saw a gynecologist. I felt like I was constantly going to different doctors.” (#40, prior mammogram + MRI) “My gynecologist called me and asked me if my oncologist was putting in the order or if she needed to. I didn’t know. She said she was going to reach out to my oncologist to see who wants to write the orders. If she wants to order it, they will let her order it. And if she’s okay with them ordering it, then they’ll order it. I haven’t heard back yet. I don’t care who writes the orders, just somebody write the orders.” (#68, prior mammogram only)

Theme 8: Healthcare providers can influence their patients’ screening behaviors.
“If [my doctor] recommends screening, I do it. I trust her, and so I feel like she’s the professional and would not recommend it if it didn’t need to be done, so I pretty much follow what she recommends.” (#121, prior mammogram only) “Some providers are not as knowledgeable. I wish that people were all on the same page, but then I can’t expect them to know everything. I can’t expect a primary to know all this stuff about breast cancer.” (#97, prior mammogram + MRI) “I do realize the standards change every day as we learn more about these particular conditions or new technology comes out. But it’s weird to go one year and they’re like, ‘No, you’re done for the next five years.’ And then the next year I go back to them and they’re like, ‘No, you need to go next year instead of five years from now.’ That’s the only issue that I have, is the mixed messages.” (#56, prior mammogram + MRI)

Theme 9: Medical history often underlies motivation for breast cancer screening.
“With my mother, they didn’t catch it in time, and she had to have her whole breast removed. She had an extensive surgery because of it. So yeah, I don’t mind going at all. I’m absolutely motivated to do anything I can to catch it early.” (#32, prior mammogram + MRI) “If I didn’t have the mutation, I would definitely keep putting it off just because life gets busy. But with the mutation, I will not put it off. I just have to know every year whether or not everything looks good.” (#28, prior mammogram + MRI) “A little over five years ago, I had an abnormal mammogram that led to a biopsy. If that didn’t happen to me, I would be more complacent. I could have easily put off screening. Before [my abnormal mammogram], I was always hesitant about mammograms. I’m in a totally different place now. It was a wake-up call.” (#131, prior mammogram + MRI)

Predisposing Factors

Theme 1: Knowledge is a necessary precondition for getting screened:

Participants highlighted several ways in which knowledge was related to receipt of breast cancer screening. First, participants noted that a woman would only pursue breast cancer screening if she knew that she was eligible. Women need to be informed of their risk status to pursue breast cancer screening at earlier ages and/or with different screening modalities. Second, participants described knowledge of one’s screening options as critical for informed decision-making about breast cancer screening. Many of the participants who had not received a breast MRI (67% of participants) reported that they had never heard of breast cancer screening modalities other than mammography. Third, even when participants were familiar with various modalities for breast cancer screening, they expressed knowledge gaps about the screening examinations themselves.

However, participants also highlighted that knowledge of one’s breast cancer risk or breast cancer screening options does not necessarily come from formal education. Rather, experience with the medical system was highlighted as more relevant knowledge for accessing breast cancer screening. Overwhelmingly, participants felt that risk information and the associated screening recommendations were complex and difficult to understand, which presented a barrier to pursuing breast cancer screening.

Theme 2: Individuals’ health beliefs affect if and how they prioritize breast cancer screening:

While several different health beliefs were identified by participants as being related to receipt of breast cancer screening, participants most frequently described the perceived severity of breast cancer and the perceived benefits of breast cancer screening procedures. Nearly all participants stated the importance of early detection for breast cancer outcomes, including morbidity and mortality. In this cohort of high-risk women, most described themselves as proactive and prioritizing preventive healthcare. However, others reflected that preventive healthcare is a lower priority for them. In sum, these high-risk women had varying beliefs about preventive healthcare in general, and breast cancer screening specifically.

Theme 3: Participants emphasized the importance of self-advocacy for high-risk women:

Despite varying health beliefs, most participants highlighted the importance of actively engaging in one’s healthcare, especially related to breast cancer risk management. Specifically, participants felt they needed to self-advocate to receive high-quality care. Participants frequently noted that they were the ones to initially raise concerns about their high breast cancer risk and/or their options for screening, not their healthcare providers. Many described seeking information about breast cancer risk management, although the underlying rationale for this varied. For some patients, this behavior was driven by the desire to be informed and knowledgeable in healthcare encounters, while others acknowledged that it was driven by anxiety.

Enabling Factors

Theme 4: Breast cancer screening is contingent on potential financial burden:

Financial burden was the theme most frequently discussed by study participants, with 97% of participants discussing financial burden in some form. In most cases, this discussion was tied to participants’ insurance coverage. Many participants stated that they would not be able to get breast cancer screening without insurance coverage for the procedure. However, most participants had not personally experienced this, and were instead discussing the situation hypothetically. Although some participants noted that breast cancer screening with mammography is covered under the Affordable Care Act, this knowledge was not universal. Several participants expressed misunderstandings regarding insurance coverage for mammography or said that they were not sure whether or not it would be covered.

Financial burden was commonly described by participants who had received screening breast MRI. Even participants who had insurance coverage for breast MRI described high out-of-pocket costs associated with the procedure, particularly those whose insurance plans included a high deductible. The high costs associated with a breast MRI forced participants to examine whether or not supplemental screening was worth the potential tradeoffs. Some participants elected not to continue breast MRIs due to concerns about financial burden.

Finally, participants raised concerns about what might happen following the screening procedure itself. Although breast cancer screening might be covered by insurance, if they were to be diagnosed with cancer, the resulting treatments might not be. Participants felt that concerns about future financial impact might prevent some women from getting breast cancer screening.

Theme 5: Logistic challenges make it difficult to get breast cancer screening:

Participants identified a wide variety of practical barriers to breast cancer screening, including accessibility, childcare, competing demands, scheduling, and time constraints. These themes frequently co-occurred in interviews. For example, a participant might note that childcare needs impacted their ability to schedule an appointment in a timely fashion.

Notably, participants frequently raised barriers that they had not experienced themselves, but that they imagined other women might experience. Participants reflected that seeking screening would be more challenging if they did not speak English or if they lived in rural communities. This type of hypothetical or contingent language was very prevalent in interview excerpts for this theme.

Nearly all participants noted that it was their responsibility to schedule an appointment for breast cancer screening. Many noted that this was a barrier in and of itself. Interestingly, several participants noted that they did not have trouble getting a convenient appointment once they took the time to pursue scheduling. Participants were grateful that screening facilities offered appointments during extended hours and noted that it would be a barrier if these appointment times were not offered.

Participants also reported that logistic barriers differ for different types of breast cancer screening. Generally, participants experienced more barriers to breast MRIs than they did for mammograms. In particular, the need for a referral and insurance pre-authorization for breast MRI was described as annoying and frustrating. In comparison, many participants were able to schedule an appointment for a mammogram without a referral from their healthcare provider. One notable exception was described by participants under age 40, who often experienced challenges in scheduling mammograms.

Theme 6: Having a support system makes it easier to get breast cancer screening:

Participants frequently raised the topic of social support as it relates to getting breast cancer screening, but they described an extremely wide variety of experiences. Some participants found comfort and support in others in similar situations, or said that people in their social network motivated them to get screening. In contrast, other participants stated that they do not discuss breast cancer screening with friends or family, and that no one provides support or encouragement to them regarding this health behavior. Finally, at the far end of the spectrum, a few participants reported that their social networks actively discouraged them from getting breast cancer screening. One participant described her husband’s reaction to screening:

“When I told him, I need to get screened, he said, ‘How much is this going to cost?’ I’m like, ‘Can you shut up? I don’t want to pay for it either, but… I’m more valuable alive. So, just shut up and go along with it.’ ” (Participant #60, prior mammogram only)

Participants whose friends and family were not supportive of breast cancer screening often reported seeking information and reassurance from other sources, such as their healthcare providers.

Theme 7: Desire for providers and systems to work together and share information:

Although this theme was less commonly raised by participants, those who did raise it expressed dissatisfaction that their healthcare was not organized or coordinated when it came to breast cancer screening and risk management. Participants had seen a wide variety of healthcare providers but did not necessarily have a “point person” with whom they discussed breast cancer screening. Generally, participants felt that the onus was on them to navigate the healthcare system and get the care that they need.

Perceived Need

Theme 8: Healthcare providers can influence their patients’ screening behaviors:

Participants discussed several different ways that their healthcare providers affected their perceived need for breast cancer screening. First, participants overwhelmingly agreed that a woman would be more likely to get breast cancer screening if she received a recommendation from a healthcare provider. However, several participants noted that they had received conflicting recommendations regarding breast cancer screening, which undermined their confidence in those recommendations and thus presented a barrier to screening. Second, participants noted that they would be more likely to follow the healthcare provider’s recommendation if they had a strong, positive relationship with the healthcare provider. In particular, trust emerged as a key characteristic of the patient-provider relationship. Participants who trusted their healthcare providers were more likely to follow their recommendations, while participants who had less trust were less likely to follow their recommendations. Third, participants reflected that their healthcare providers had varying levels of knowledge about breast cancer risk. This was particularly true in the primary care setting, and for participants who carried pathogenic genetic mutations that increased their risk for breast cancer. Participants felt more comfortable with their healthcare providers’ recommendations when they demonstrated more knowledge about breast cancer risk.

Theme 9: Medical history often underlies motivation for breast cancer screening:

Participants’ perceived need for breast cancer screening was primarily due to their family medical history and their personal medical history. Family history was particularly motivating for breast cancer screening when women had seen a close relative go through breast cancer diagnosis and treatment. Several participants reflected that breast cancer screening was a way to ensure that they did not have the same experience.

Interestingly, a few participants noted that their family history of breast cancer did not significantly impact their perceived need for breast cancer screening. Thus, having a family history of breast cancer did not universally motivate women to pursue breast cancer screening, despite being at higher than average risk for breast cancer.

Participants also discussed many different components of their personal medical history that increased their motivation for breast cancer screening. These included pathogenic genetic mutations, non-cancer breast diseases (e.g., atypical hyperplasia), and a history of abnormal breast cancer screening. Participants with these conditions highlighted that their diagnosis changed their risk-benefit calculation for breast cancer screening. Unlike having a family history of breast cancer, participants with a personal history that increased their breast cancer risk universally described being motivated to pursue breast cancer screening.

Discussion

The current study explored barriers and facilitators of breast cancer screening among women with high lifetime risk for breast cancer. Although prior research has qualitatively examined high-risk women’s experiences with breast cancer screening procedures [29], this study extends the prior literature to assess upstream determinants of screening. Guided by the HSUM, we identified key predisposing, enabling, and need factors associated with receipt of breast cancer screening in this population. The resulting themes represent potential targets for interventions designed to increase screening uptake among high-risk women.

One of the key themes raised by participants was the need for knowledge – both knowledge about one’s risk, and knowledge about what to do about elevated risk. This confirms our previously published quantitative results, which indicated that higher breast cancer knowledge was associated with prior receipt of breast MRI among high-risk women [18]. However, the other predisposing factors that emerged from these interviews further enhance our understanding of characteristics that are internal to high-risk women and may drive their use of screening. Specifically, health beliefs and self-advocacy were also strongly emphasized by participants as potential drivers of screening behavior. Taken together, this suggests significant potential for the application of patient activation interventions in this context. In the healthcare context, patient activation refers to having the knowledge, skills, and confidence to manage one’s health [30]. Meta-analytic data demonstrate that interventions targeting patient activation (e.g., health coaching, problem solving, individualized care plans, peer support, lay health advisors, skill building, etc.) significantly improve physical and psychological well-being among patients with chronic disease [31]. Although less data is available on the effects of patient activation on cancer screening behaviors, the results presented here suggest that such an intervention may address some of the key predisposing factors driving these behaviors.

However, it is clear from the results of the present study that there are barriers to screening extending far beyond predisposing factors alone. The patient-provider relationship, and particularly trust in one’s provider, were identified as essential for supporting breast cancer screening behaviors. Nevertheless, interview participants acknowledged that even trusted providers may not have the time or expertise to provide guidance about breast cancer screening for high-risk women. This is supported by prior literature. One survey of 805 primary care providers (PCPs) found that fewer than half were comfortable making breast cancer screening recommendations for high-risk women [32]. Similarly, a study of 72 providers found that PCPs were less likely than gynecologists and radiologists to recommend breast MRI for high-risk women [33]. Thus, systems-level solutions may be required to overcome some of the challenges faced by providers in caring for high-risk women.

Systems-level solutions could address barriers raised by interview participants, particularly enabling factors. Routine breast cancer risk screening – ideally using multiple risk prediction models [2] – would enable identification of individuals who are eligible for risk-management interventions. Once identified, women could be notified of their risk-management options through automated means, without relying on providers to initiate conversations about breast cancer risk management [34–36]. Finally, the costs of breast cancer screening must be addressed [37]. Policy changes are needed to ensure insurance coverage for breast cancer screening for high-risk women, including screening at earlier ages, more frequent intervals, and with supplemental technologies like MRI.

Interestingly, many of the interviewees in this study posed hypothetical barriers others may find, as opposed to their own experience of accessing breast cancer screening. This is likely due to the sociodemographic composition of our cohort, which was primarily non-Hispanic White, college educated, from high income households. Prior studies have examined high-risk breast cancer screening among sociodemographically diverse women. Race and ethnicity are inconsistently related to high-risk screening uptake, with some studies reporting differences by race or ethnicity [38,39] and others reporting no such differences [16,40–42]. Education and income are more consistently related to screening uptake among high-risk women [16,40,41]. To improve breast cancer risk management in underserved high-risk populations, we must attend not only to screening rates but also to upstream factors. However, there is limited prior research on specific barriers to breast cancer risk management experienced by these groups [43], which may drive differences in screening receipt. What does exist primarily focuses on perceived breast cancer risk [44–46], but the risk-management decision-making process for underserved and minority women is complex and multifaceted [47,48], and factors beyond perceived risk are likely to play a role. Additional research is needed to understand and address barriers experienced by high-risk women from historically underrepresented racial and ethnic groups and with lower socioeconomic status.

Limitations

The interpretation of these results must be informed by the study’s limitations. First, only 51% of patients approached agreed to participate. Thus, results may be subject to selection bias. Second, responses may be subject to social desirability bias due to lack of anonymity during study interviews. Third, most participants were non-Hispanic White and highly educated. It is possible that theoretical saturation was only achieved due to the homogenous nature of the cohort [49]. Additional research including heterogenous patient populations would increase the fidelity and utility of the findings presented here. Finally, study interviews were conducted during the COVID-19 pandemic (November 2020 to March 2021), which may have affected participants’ responses.

Conclusions

This study identified factors associated with breast cancer screening for high-risk women that represent possible intervention targets. Based on our results, interventions designed to increase access to and use of breast cancer screening in this population might include the following: education about breast cancer risk and risk management recommendations; patient activation; routine screening for breast cancer risk; and increased insurance coverage for screening. Future research with more diverse populations is needed to develop and test multilevel interventions incorporating these components, with the ultimate goal of increasing access to risk-appropriate cancer screening.

Data Availability:

The datasets analyzed during the current study are not publicly available, as qualitative interview data cannot be completely anonymized, even when aliases are used to replace names. Data are available from the corresponding author (CCC) on reasonable request.