Susan G. Komen
Background: The role of patient navigators in minimizing or eliminating systemic barriers for people diagnosed with early-stage breast cancer is supported in the literature; however, less is known about how patient navigators can support people living with metastatic breast cancer (MBC). People living with MBC have unique needs, yet patient navigation training programs lack responsive content to better prepare patient navigators serving those people. There is a lack of systematic effort focusing on patient navigators’ preparedness to address the specific needs of people living with MBC, and the few existing efforts provide only limited direction.
Objectives: To explore the barriers and challenges of people living with MBC and identify the needs of patient navigators supporting MBC communities to inform future patient navigation training and support this community.
Methods: Two phases of focus groups with people living with MBC (phase 1) and patient navigators (phase 2) were conducted. Data from those focus groups were analyzed using a constant comparison approach.
Results: Analysis of 4 focus groups of people living with MBC (n=17) yielded 9 themes: positive healthcare experiences; challenges of diagnosis: symptoms and pain; challenges with healthcare professionals; challenges with the healthcare system; health insurance uncertainty; health inequities; coping and support; characteristics of an ideal patient navigator; and identified support needs. Analysis of 3 patient navigator focus groups (n=11) yielded 9 themes: role of patient navigators, navigation success stories, navigation strategies, helpful navigation resources, navigator needs, barriers to navigation, challenges within the healthcare system, descriptions of an ideal patient navigation training, and unique navigation needs for people living with MBC.
Conclusions: While people living with MBC have identified many ways of coping with and navigating barriers, they discussed the desire for every person to have access to patient navigators to help address some of these challenges. Patient navigators expressed a desire to address the barriers within their scope of practice and described training needs that would better equip them for this role. Findings from this study highlight the need to have more comprehensive patient navigation training that includes a focus on meeting the unique needs of people living with MBC and inform the development of training and support for patient navigators supporting MBC communities.
Metastatic breast cancer (MBC; also called stage IV disease) is cancer that has spread beyond the breast and nearby lymph nodes to other parts of the body (most often the bones, lungs, liver, or brain). It is estimated there were more than 168,000 women living with MBC in the United States in 2020.1 People living with MBC (the preferred way to identify people in this community)2 face unique challenges relevant to their diagnoses and treatment. For example, they may face underinsurance, especially in states without Medicaid expansion, or barriers to insurance coverage of preferred treatments.3,4 In addition, confusion about health insurance coverage may cause delayed or forgone care if people perceive costs to be high.4 Besides cost, there can be challenges to receiving certain types of healthcare, such as palliative care and clinical trials, when they are not integrated into standard care or are geographically inaccessible.3 People living with MBC have also cited lack of information about MBC as a major concern, exacerbated by unclear access to professional support and communication gaps between providers and patients.3,5
People living with MBC have also cited lack of information about MBC as a major concern, exacerbated by unclear access to professional support and communication gaps between providers and patients.
People living with MBC, particularly those from historically marginalized communities, face unique challenges in their day-to-day lives. For example, people of color are more likely to experience negative impacts on employment and personal finances than White people, including taking leave, stopping/reducing work, borrowing money, skipping medical/nonmedical bills, and stopping treatment because of costs.6 In addition, transportation barriers can inhibit access to cancer care, and these challenges are exacerbated for people living in rural settings, where providers are located further away and public transportation is not available.7 People living with MBC are estimated to spend 7% to 10% of their time on healthcare during their first 3 months of treatment, with travel to care and inpatient services making up the greatest time contributions.8
People living with MBC and advocates within healthcare systems employ measures to address these barriers and challenges. People living with MBC report seeking out their own information and writing self-directives.5 In addition, they share that social support from friends and family is integral to their well-being.5 Healthcare professionals who integrate complementary and alternative therapies have been shown to address many barriers and needs of people living with MBC.5
Patient navigation has been shown to be effective in addressing many of the needs and barriers of people living with breast cancer.9,10 The Professional Oncology Navigation Task Force defines patient navigation as “individualized assistance offered to patients, families, and caregivers to help overcome healthcare system barriers and facilitate timely access to quality health and psychosocial care from prediagnosis through all phases of the cancer experience.”11 Evidence shows patient navigators help improve participation in cancer screening, reduce time from screening to diagnosis and diagnosis to treatment, improve quality of life and patient satisfaction, and reduce hospital readmissions.12
Patient navigation has also been shown to improve cancer care, specifically breast cancer care, for marginalized and underserved patients, including improved screening rates,13 time from screening to diagnosis and diagnosis to treatment,9 and quality of life.10 However, research on the readiness of patient navigators to serve people living with MBC is lacking.
People living with MBC and those supporting them note that access to patient navigation is limited, particularly as it relates to services that would be helpful for them (eg, palliative care).3,12 The literature lacks information on the impact of patient navigation on people living with advanced and metastatic cancer and the degree to which patient navigators are trained to meet their unique needs.12,14
In addition, there is no known effort to create a standard patient navigation training program to prepare navigators to meet the needs of people living with MBC.
The mission of Susan G. Komen is to save lives by meeting the most critical needs in our communities and investing in breakthrough research to prevent and cure breast cancer. Our strategic priorities focus on conquering aggressive and deadly breast cancers (such as MBC) and ensuring all people get the care they need to achieve health equity. Susan G. Komen’s patient navigation services exist to help achieve these priorities and fulfill our mission. Susan G. Komen’s Patient Care Center provides services to more than 50,000 patients per year through a team of patient navigators who have undergone high-quality training and are assessed to ensure they meet the established competencies for patient navigators aligned with the Oncology Navigation Standards of Professional Practice.11,15 These navigators also complete ongoing professional development and are active members of the Academy of Oncology Nurse & Patient Navigators (AONN+). Despite the strength of their professional development and training, Susan G. Komen navigators realized that while one-fourth of the people they served were living with MBC, there were unique needs in these communities for which they felt their training had not prepared them. There was a need to explore options for standardizing patient navigation training to better prepare navigators to serve MBC communities.
The importance of understanding patient navigator training needs and creating standardized training to serve people living with MBC is salient and timely. During the course of this study, the Biden administration mobilized the Biden Cancer Moonshot to prevent more than 4 million cancer deaths by 2047 and to improve the experience of people who are touched by cancer.17 These efforts included the goal of “making navigation services available for every American with cancer” through the Centers for Medicare & Medicaid Services by connecting some repayment for patient navigation services to standardized training and recognizing patient navigators should seek reimbursement.17 However, this new initiative has not yet been widely adopted, and standardized training is still not widely accessible. Additionally, the patient navigation workforce is also expected to quickly expand.17 As such, our study seeks to better understand the challenges and barriers faced by people living with MBC and fill the gaps in patient navigator preparedness to better and more consistently meet the needs of this community.
The study design involved a collaborative snowball approach to recruitment and phased data collection (Figure 1). Our team identified points of contact for advocacy, healthcare, and Susan G. Komen–affiliated individuals, groups, and organizations serving both people living with MBC and patient navigators to recruit these communities to participate in the present study. The points of contact invited individuals to complete an interest form (via Qualtrics online survey) to share more details about the study, confirm interested individuals’ eligibility, and collect individuals’ availability for virtual introductory and focus group calls. Recruitment was ongoing throughout the study to schedule as many interested participants as possible.
Interested and eligible individuals were invited to participate in a 1-hour virtual introductory call via Microsoft Teams. During that call, individuals completed the informed consent process. Participants’ schedules were confirmed, and they were assigned to attend a 2-hour virtual focus group either for people living with MBC or patient navigators during summer 2023.
Before joining their assigned focus group call, all confirmed participants completed an online participant survey via Qualtrics. The survey included 9 questions to collect demographic information and information about their experience as someone living with MBC or as a patient navigator.
Our team collected qualitative data in 2 phases. Phase 1 of the focus groups was conducted with people living with MBC. The facilitator used a focus group guide to ask participants about barriers associated with their diagnosis and to what extent they felt patient navigators could be a resource to help address those barriers. The experiences of phase 1 participants were used to adapt the phase 2 focus group guide. The facilitator summarized the specific challenges and barriers identified by the phase 1 focus groups to share with the patient navigators in phase 2 focus groups. Questions in phase 2 focus groups determined the extent to which patient navigators felt the barriers identified in phase 1 were within their capacity and ability to address.
Survey data were analyzed using Excel and Qualtrics and presented as descriptive statistics in summary tables and charts. Focus group data were uploaded to a transcription company compliant with HIPAA (Health Insurance Portability and Accountability Act), and the transcriptions were reviewed for accuracy and deidentified. Final transcripts were analyzed in NVivo using a constant comparison approach. The inductive themes were named and defined in the phase 1 and phase 2 codebooks, which were used to analyze the focus group data.
Four focus groups were conducted with people living with MBC (n=17), and 3 focus groups were conducted with patient navigators (n=11), for a total of 28 study participants (Table).
Almost all (94%) participants living with MBC were non-Hispanic White (76%) and non-Hispanic Black (18%; Figure 2). Approximately one-third (37%) of patient navigators were Hispanic and Latina/o (any race), 36% were non-Hispanic White, and 27% were non-Hispanic Black.
When asked how they were diagnosed with MBC, most participants (n=13; 81%) were diagnosed when breast cancer recurred, while 19% (n=3) were diagnosed de novo (ie, MBC was their first diagnosis).
Most participants (50%) were diagnosed more than 5 years ago or in the past year (38%). Only a few (12%) were diagnosed 2 to 5 years ago (Figure 3).
All participants had health insurance (Figure 4). The largest group of participants (43%) had private health insurance, 30% had Medicare, 17% had Medicap or a Medicare Supplement, 4% had Medicaid, and 4% were recipients of Charity Care. No participants were insured through the Veterans Affairs program, had unknown insurance, or were uninsured.
All patient navigator participants had at least 1 year of work experience (Figure 5). Almost half (45%) had 1 to 3 years of experience, 10% had between 3 and 5 years of experience, and 45% had more than 5 years of experience.
Patient navigators were asked about any certifications they held (Figure 6). Most (64%) did not have a patient navigation training certification. Of the 36% of participants with certification, 67% were certified through AONN+ and 33% were certified through the National Consortium of Breast Centers.
Nine themes emerged from the focus groups with people living with MBC:
Figure 7 includes a description of each theme.
Participants living with MBC described positive experiences with the healthcare system and ways they were coping with or being supported through their diagnosis. However, most of the experiences discussed were related to difficulties with their health insurance, challenges within various healthcare settings, and the physical and psychological impacts of their diagnosis. While all participants were aware of potential benefits of patient navigators, most participants did not have access to patient navigators.
The general description of “most” not having access to patient navigators is based on conversations in focus groups. A set percentage of participants that did not have access to patient navigators cannot be defined in a specific number or percentage because the focus group leader did not specifically ask this question.
The doctors didn’t even tell me that there was such a thing as patient navigators or people that would help decipher all of this…they kind of just threw everything at me and expected me to be able to decipher it all. And all of a sudden, I went from having not even a primary care doctor to a barrage, a whole team of people to coordinate and try to—it just was too much, too fast, really overwhelming. And it would have been great to have somebody to ask questions. And they didn’t really offer that or let it be known that the cancer center had somebody that could help with things like that.
Participants discussed challenges associated with not having resources geared toward later-stage diagnosis, having minimal social support available, and having few or no professionals available to discuss concerns unique to people living with MBC (eg, side effect management, palliative care, and end-of-life arrangements). Participants described the coping mechanisms that had been helpful in managing their diagnosis, including advocating for the treatment they needed and seeking out social support from others living with MBC, but they all agreed a missing element in their life was an individual that could help decrease some of the barriers in the healthcare system and their overall lives. All participants agreed there was a benefit to having a patient navigator.
Any sort of patient navigation around navigating all of these other toxicities that cancer brings, like the financial toxicity, the cardiotoxicity, dental situations [would be helpful] because I think not a lot of those things are addressed even right up front to let you be prepared for it.
Nine themes emerged from the focus groups with patient navigators serving people living with MBC:
Figure 8 includes a description of each theme.
Patient navigators were aware of the opportunities and boundaries of their role, and many shared positive experiences of using strategies and resources to successfully reduce barriers for people diagnosed with breast cancer. They seemed humbled by their role and felt they were uniquely equipped to positively influence outcomes for people living with MBC.
What’s particularly unique about our services to patients is that…we do more wraparound support….The metastatic community has so many other things that they think about, because all they know is that “this is what’s going to kill me.” And I hate to say it that way, but that’s what they share. That’s how they say it. And they’re like, “Well, I need to see what else I need to do about everything around me.” So finding out what resources are available for them locally is very important….
Despite some success, participants also discussed the obstacles that made navigating patients challenging. Many experienced challenges that left them feeling frustrated and helpless. These challenges included the lack of resources for transportation, minimal financial assistance for treatment-related costs, lack of social support for those living with MBC, limited capacity to manage their diagnosis, provider bias, poor coordination of care, and the challenges of the diagnosis.
We have trainings and things to try to shield as much of it as we can. But because we’re all caring people, it’s going to sink in at some point, especially when you have several patients that are dealing with equally heavy things.
Participants discussed things they felt would help them manage these challenges and make them better as patient navigators, including more resources, ways to identify burnout, and more patient navigation training. Participants described a need for more peer-to-peer connection with other patient navigators, and they described the ideal patient navigation training as interactive and continual.
I would like for [patient navigation training] to be continued sessions that I’m able to really digest what we’re talking about, have time to think about it….I would like sessions to be able to hear examples and hear about experiences, and then just ways of tackling those things that would be most effective.
Participants overwhelmingly embraced the necessity of their position in the lives of people living with MBC, but they all expressed a need to be better prepared to meet their unique navigation needs, which may be distinct from those living with early-stage breast cancer (eg, how to support conversations about palliative and end-of-life care).
And so navigation-wise purely, I don’t think I have been trained specifically for [navigating people living with MBC]. It’s more what experience has taught me and, of course, what they teach me on a daily basis. So any tool or any specific that can come out from this will be greatly appreciated by all navigators, I am sure.
This study illustrated the benefits of connecting patient navigators with all people diagnosed with breast cancer, especially people living with MBC. Based on these findings, the authors drafted the following 4 recommendations:
Using the findings of this research, in fall 2023, Susan G. Komen began developing content, including a training course, to equip navigators to meet the identified needs of people living with MBC. The course was reviewed by subject matter experts and participants in this study. The final training course is now available in Susan G. Komen’s online Patient Navigation Training Program, featuring live peer support discussion groups, a self-assessment tool to identify where additional skills and resources are needed, and a list of resources for continuing education. The course and other content are being evaluated for knowledge gained, increased capacity of trained navigators, and impact on patients navigated by Susan G. Komen’s Patient Care Center. In addition, Susan G. Komen is working to enhance and build awareness of available resources for people living with MBC while improving access to these resources and other navigation services like those within Susan G. Komen’s Patient Care Center.
This study was limited by a small sample size and homogeneous demographic composition. While the study size is common for an exploratory study such as this, future studies would benefit from recruiting participants with a more diverse sociodemographic background. Despite these limitations, the purpose of the study was to begin exploration of the training needs for patient navigators serving people living with MBC, and the insights gathered remain invaluable in informing training specific to this community.
Patient navigators are integral members of a healthcare team. However, people living with MBC have limited access to these professionals; there is a lack of understanding of the services navigators can provide, and there is a lack of standardized training to equip patient navigators to respond to the unique needs of people living with MBC. This study is the first known effort to explore the barriers and challenges of people living with MBC for the purpose of exploring what training and/or resources patient navigators need to address these unique barriers and challenges. The innovative patient navigation training content, including the MBC training course and learning community dedicated to meeting needs identified in this study, is also the first known effort of its kind. There is room to learn more about the needs of people living with MBC, patient navigators’ needs, and the impacts of the patient navigation training content. Future research should further explore the gaps in patient navigation training and the extent to which this new content is filling the gaps and/or can be adapted to better meet the training needs of patient navigators. In addition, future research on the longer-term efficacy of the patient navigation training content will be beneficial.
The authors would like to thank Sam Scott, Victoria Smart, and Cati Stone for contributing to this work. The authors would also like to thank the participants for contributing their time and insight to this work, as well as Gilead for their continued partnership.
Gilead Sciences
Keep up to date with the latest news from us via social networks:
To sign up for our print publication or e-newsletter, please enter your contact information below.
