Rural Primary Care Providers’ Perceptions of Their Role in the Breast Cancer Care Continuum
This research was supported by grant no. H57/CCH420134 from the Centers for Disease Control and Prevention (PI, Bruce Behringer, MPH). The authors wish to thank the primary care provider participants for their time and the meaningful dialogue that made the study possible. For further information, contact: Kathleen M. Rayman, PhD, RN, Graduate Program Director, PO Box 70658, East Tennessee State University, Johnson City, TN 37614; e-mail firstname.lastname@example.org.
Context: Rural women in the United States experience disparity in breast cancer diagnosis and treatment when compared to their urban counterparts. Given the 11% chance of lifetime occurrence of breast cancer for women overall, the continuum of breast cancer screening, diagnosis, treatment, and recovery are of legitimate concern to rural women and their primary care providers.
Purpose: This analysis describes rural primary care providers’ perceptions of the full spectrum of breast cancer screening, treatment, and follow-up care for women patients, and it describes the providers’ desired role in the cancer care continuum.
Method: Focus group interviews were conducted with primary care providers in 3 federally qualified community health centers serving a lower income, rural population. Focus group participants (N = 26) consisted of 11 physicians, 14 nurse practitioners, and 1 licensed clinical psychologist. Data were generated from audiotaped interviews transcribed verbatim and investigator field notes. Data were analyzed using constant comparison and findings were reviewed with a group of rural health professionals to judge the fit of findings with the emerging coding scheme.
Findings: Provider relationships were characterized as being with women with cancer and comprised an active behind-the-scenes role in supporting their patients through treatment decisions and processes. Three themes emerged from the interview data: Knowing the Patient; Walking Through Treatment With the Patient; and Sending Them Off or Losing the Patient to the System.
Conclusions: These findings should be a part of professional education for rural practitioners, and mechanisms to support this role should be implemented in practice settings.
Breast cancer is an illness of national concern, with more than 180,000 women diagnosed with the disease yearly in the United States.1 The continuum of breast cancer care flows from prevention and screening through diagnosis, treatment, and posttreatment follow-up.2 Advances in diagnosis and treatment options have expanded, and the emergence of highly specialized cancer treatment centers and multidisciplinary teams of specialists have played a role in increasing survival rates and maximizing positive outcomes for patients.3
Yet, rural women in the United States experience disparity in breast cancer diagnosis and treatment, with diagnosis occurring at a later stage than their urban counterparts.4 Rural women also have persistently lower mammography screening rates.5,6 Lack of insurance, geographic inaccessibility of screening mammography, lack of health knowledge, lower income, and lower rates of education influence screening activities, and they have been cited as contributors to lower rates of screening in rural areas.7–10
Provider recommendation to undergo mammography has been noted as one of the most important reasons for compliance.11,12 Provider factors that may affect screening and are associated with early diagnosis and treatment have been identified. These include specialty of provider, gender of provider, provider confidence in and knowledge of screening guidelines, office systems that prompt recommendation, and perceptions of patients’ beliefs about screening. These patient and provider factors are operational and may be exacerbated in rural practices, where providers have fewer office support systems and training opportunities, and where cultural perspectives between provider and patients may differ.6,13–17
Primary care providers most likely to practice in rural and underserved areas include family physicians, nurse practitioners, and physician assistants. These providers often maintain long-standing relationships with their patients, and they strive to build trust and rapport with them.18 Primary care providers’ roles in breast cancer care include screening, diagnosis, referral, and posttreatment follow-up.16,19,20 Rural primary care providers have been shown to value education about cancer screening, diagnosis, and treatment yet struggle to keep up with recommended guidelines and the plethora of new treatment information and options.13,21,22 They are likely to be the provider who discovers, or sets in motion a referral that discovers, a breast cancer diagnosis. Yet, when cancer is confirmed, care of the rural patient is immediately and appropriately transferred to a cancer center or tertiary care facility that offers oncology services in the forms of surgery, chemotherapy, and radiation treatments. While breast cancer patients may be transferred from oncology care back to primary care providers at the completion of treatment, the timing of the transfer and the responsibilities of the primary care provider are not yet guided by scientific evidence.23–25
Rural women and providers experience additional challenges as treatment begins in specialized centers, which are located in urban areas that are often far from the familiarity of the patient's home. Distance to oncology centers may play a role in the ability of the patient to complete treatment, causing loss of work, income, and additional family stress beyond that already caused by the illness. Distance may increase the potential for fragmentation of care between cancer specialists and primary care providers, and it may compromise the continuity of care.26 The value of coordination among providers and continuity of care in increasing adherence to screening guidelines has been demonstrated.10,27 Similarly, coordination of care in cancer treatment is associated with improved patient outcomes.3
Given a woman's 11% chance of lifetime occurrence of breast cancer,9 the continuum of breast cancer screening, diagnosis, treatment, and recovery are of legitimate concern to rural women and their primary care providers. Few studies have addressed the current roles of the primary care provider in breast cancer care for rural women, and little is known of their preferred roles in screening, during breast cancer treatment, and after treatment.
Purpose of the Study
The purpose of this qualitative study was to describe rural primary care providers’ perceptions of the full spectrum of breast cancer screening, treatment, and follow-up care for female patients in their practices, and to discover their desired role as providers in the cancer care continuum. The study was approved by the University Institutional Review Board for the protection of human subjects.
Setting and Participants
The study was conducted in 3 rural primary care practices in Appalachian areas of southwest Virginia and northeast Tennessee. All 3 practices were federally qualified community health centers serving a lower income, rural population. The clinics were located from 33 to 70 miles from tertiary cancer referral centers. In each clinic setting, an average of 10 women were diagnosed with breast cancer in a year's time.
A group interview with providers was conducted at each site. The number of focus group participants ranged from 8 to 10, with a total of 26 participants. Of these, 8 were men and 18 were women. There were 11 physicians, 14 nurse practitioners, and 1 licensed clinical psychologist. The length of time in practice ranged from less than 1 year to more than 20 years. Five of the providers considered themselves Appalachian and had grown up in the communities they now served, and 5 additional providers had grown up in other rural areas. The remainder was originally from suburban areas or urban centers.
Data Collection and Analysis
A qualitative, inductive interpretive approach was used to collect interview data with each of the 3 focus groups. Consistent with an inductive interpretive approach, hypotheses were not prespecified or tested.28 Rather, findings for this study emerged from understanding and interpreting the experiences described by the providers. Data were generated from structured focus group sessions and investigator field notes. Focus groups were used to enrich the description and facilitate comprehensive interpretation of the data.29 A structured group format in which each participant was asked each question captured certain dimensions of the data for all participants, and it allowed them to respond to each other's comments and interject freely throughout the group sessions. Each participant was asked a “grand tour” question, “Tell us about your experiences in the continuum of care for breast cancer in your practice, from screening and detection to follow-up after treatment.” Subsequent questions were generated as the discussion took shape and were guided by participant responses. For example, participants were asked to describe what barriers to participation in the continuum of breast cancer care for their patients they had encountered, and what was working well.
Data collection and analysis proceeded simultaneously. Data from the 3 focus groups (N = 8; N = 8; N = 10) consisted of responses from primary care physicians and nurse practitioners and 1 psychologist educationally prepared at the doctoral level. Focus group interviews were audiotaped and lasted 2 to 2.5 hours each. Audiotapes were transcribed verbatim. Data were analyzed using the constant comparative method where portions of text were compared to yield categories and themes. Reassessment and refinement of the categories and themes continued throughout data collection and analysis, resulting in an explanation of the providers’ experience of providing cancer care to rural Appalachian women with breast cancer. Emergent findings were reviewed with a group of health professionals practicing in rural areas in the region to assist with establishing credibility and truth. The providers reviewed emergent findings to judge the fit of the findings with the emerging coding scheme. This step assisted with finalizing the findings, and in developing a cohesive explanation or model of provider experiences.
Primary care providers in the study described their experiences of providing cancer care to rural women with breast cancer. For all providers, relationships with patients were paramount. These relationships provided a way to encourage patients to seek screening when they had not before, and the relationships were the impetus for providers to problem-solve, coordinate, and piece together services needed by patients. Three themes emerged from the interview data: Knowing the Patient; Walking Through Treatment With the Patient; and Sending Them Off or Losing the Patient to the System.
Knowing the Patient
Providers described 4 dimensions of having personal knowledge of their patients with breast cancer that had bearing on patient screening and treatment. Patients viewed them as trusted experts, and they in turn viewed their patients as experts in their own lives. The providers in this study did not tell their patients what to do; rather, they got to know the women and many details of their lives. This detailed knowledge of the particulars of patients’ lives provided insight into what kept them coming for care, what got them to screening, and also provided specifics regarding barriers to screening and care. For example, a woman who had never had a mammogram (though understanding fully the importance of the test, given her age and family history), would decide to have it because the provider suggested it. Providers expressed their belief that simply telling their patients to have the test did not make a difference or have an impact on screening behavior. But, because providers had relationships with the women in their practices, knew the details of their lives, and could make a suggestion specific to their personal circumstances, they influenced screening and treatment behaviors in positive ways. The following provider comments illustrate this:
I make a really big point at every visit, whether it's a cold or what, to ask them screening questions like, “Have you had your pap smear, mammogram?” And, I get a lot of people (women) who say “You know, I haven't in a really long time and I should do that.” And they come back for it, just from me asking and somehow having … creating some sort of dialogue that it doesn't have to be a scary thing.
One patient had breast cancer and was very independent in her care. I sent her to one doctor and he wanted to do a mastectomy. She researched it on the Internet and she said no. She wanted a lumpectomy and she was well-informed and she is doing really well today. She went with what she wanted to do and I think that's really important.
Providers believed the women responded to their suggestions not so much because they were health care experts (though they clearly felt the women viewed them in this way, and depended on their expert knowledge), but more so because there was a human-to-human caring connection. Medical expertness and caring human qualities were equally valued by their female patients, according to the providers. Women were motivated to screening, self-care, and treatment because their providers cared about them, not just cared for them. In this way, the trusted relationships they had developed offered a type of leverage toward self-care—women cared for themselves because their providers cared for them personally. One provider's comment depicts the value placed by providers on relationships with their patients: “You know the patients more than anybody else. I think it falls on your responsibility to explain it to the patient because they will listen to you better than anybody else.”
Walking Through Treatment With the Patient
Primary care providers described that patients in treatment for breast cancer commonly came to them after a visit to the specialist or oncologist at the cancer center to elicit their opinion on recommended treatments and therapies before initiating the prescribed treatment. Patients relied on the primary care providers to manage symptoms, interpret information, and to help them make sense of their personal experience of breast cancer. The women relied on their relationships with their providers as trusted experts and wanted their view on recommended therapy before they were willing to start. In essence, they went home to the doctor or nurse practitioner that they knew to ask “what do you think of this (treatment or therapy)?” as illustrated by the following provider comments:
When she found out she had breast cancer she wanted me to walk through it with her. It was a high compliment to me, and I cherish that.
A woman might say, “The specialist gave me this to take. Do I need to take it?” And when I asked when, she’d say, “Two weeks ago. Is it okay if I start it?” Sometimes women will come into my office and say “My oncologist is recommending this, what do you think?”
For some providers this situation was uncomfortable. Reasons for discomfort included lack of knowledge of current treatment protocols, lack of communication from the oncologist regarding exactly what that person had communicated to the patient, and even inability to discern specialists’ handwriting on patient records from the oncology center. For some providers, the Internet was a source of state-of-the-science treatment, and they relied on it often to stay current and to be able to answer patient questions. They expressed that patients frequently brought current treatment information to them, as patients and providers alike had access to a great deal of electronic information. Sometimes, they struggled to keep up with their patients’ knowledge about treatment, or tried to help them sort out which information should receive their attention. Providers described patients who ranged from highly literate and Internet savvy to illiterate and unable to read medication bottle instructions. Some providers stated that certain patients used the Internet extensively to inform themselves about possible treatments, yet other providers found that only a handful of patients had Internet access. In the words of one provider:
I’ve taken care of a lot of poor people (in a previous metropolitan practice setting) … but they’re city people and they know about mammograms and colonoscopies and they know about pap smears and they know they’re supposed to get them. … I wouldn't say that the (urban) patients were necessarily more educated from the standpoint of school, but they were more educated in health issues.
Sending Them Off: Losing the Patient to the System
Although many patients initiated contact with the rural provider during treatment, for some providers, referring patients to oncology specialist care resulted in patients being out there. They were not sure what was happening with their care, and they felt out of the loop. This group of providers described discontinuities in care related to who's in charge, or not knowing clearly which responsibilities for patient management belonged to the rural provider, and which would be handled by the oncologist. This lack of clarity started, for some, at diagnosis. Sometimes providers were unclear about who would give information to the patient regarding her diagnosis, stating that in certain instances, the oncologist wanted only to handle treatment, and not any of that other stuff such as giving diagnostic bad news, offering support, or handling patients’ emotional needs as a part of care. For example:
If the biopsy comes back positive then most times the surgeon or whoever's there will actually call me and tell me that the biopsy is positive and in those cases I call the patient into the office and discuss it with them.
The biggest problem I have is if I send them away, knowing who is going to tell them because that is a terrible experience. … I had recently a lady with carcinoma on the biopsy and I called and asked them (cancer center) if they had told her and they said, “No, no, you tell her that.” I wasn't aware that I was to tell her … .
The providers described their perceptions that some specialist care was very segmented, while their own personal approach to practice and to their patients was holistic and inclusive. It was not that they minded giving information about diagnosis and even treatment (provided they felt appropriately informed); what they reacted to was the effect that this fragmentation had on their patients. The women often had a several-day wait between diagnostic testing and learning of their diagnosis and upcoming therapy, if the oncologist took the position that he or she dealt with only the treatment portion of the illness. Providers viewed this as being looked down upon by their specialist colleagues, and as a devaluing by specialists of both the patient's experience at the critical time of diagnosis, and of the provider's role as one who dealt with more “low-tech” areas of patient care. The following provider comments illustrate their experience of feeling devalued:
We are pretty much a remote, disregarded referral source.
Once they go to the center or to the surgeon we’re pretty much out of the loop until they show up post (surgery or treatment).
There was the impression that in this town that we might be behind in our practice, but we have made some new doctors … realize that we’re not behind.
Even within the rural settings, however, providers had differing experiences with their referral sources. Although all acknowledged fragmentation of care, some described good personal relationships with specialists in referral centers that smoothed communication processes and coordination of care, as depicted by 1 provider's comment: “I get a letter from the oncologist every time that he sees them … to keep me informed of what's going on.”
Providers described a set of barriers that, in their view, contributed to the discontinuities experienced by some of their patients with breast cancer. Financial barriers were noted frequently, since rural women often had to schedule screening or treatment during the week, necessitating that they miss a day of work. The expense of travel to referral centers was also noted as a barrier by some, as was the financial burden of certain treatments or drugs not fully covered by insurance. Overall, the providers in this study noted that their uninsured patients fared far better in terms of treatment than those who were underinsured.
The primary care providers in this study described their major roles in the continuum of breast cancer care as knowing their patients personally; they clearly valued the relationships they had established with breast cancer patients and believed that breast cancer patients, from screening to posttreatment follow-up, responded to the mutual caring established in provider-patient relationships. The idea of the importance of a mutual and personal patient-provider relationship stands out as critical to optimizing outcomes of all aspects of the continuum of breast cancer care for rural women. Consistent with Kleinman,30 the providers in this study viewed their patients as experts in their own lives. They believed that their personal knowledge of patients’ circumstances and needs led to more individualized, appropriate care. Providers also believed that their patients viewed them as trusted experts related to their health. This finding is consistent with that of Parchman and Burge,18 who found that well-established patient-provider relationships lead to trust, which can in turn positively influence achievement of needed care. The ability of providers and patients to form relationships needs to be supported through practice patterns that promote continuity of care.31 Relationships, as described by participants in this study, went beyond service arrangements and enhanced communication; the relationships were characterized as being with women with cancer. This finding suggests that these providers offer a cultural milieu that sees and knows people and that is an integral part of their practice. This characterization is analogous to an ethic of care described by Frank,32 wherein providers are interested in hearing their patients’ illness stories and consider both the personal narrative and life context as essential to providing care. According to Frank, patients’ stories of their illness provide the opening to being with patients on their illness journey. Such presence, according to these rural providers, was as important to their patients with breast cancer as clinical care and treatment.
Viewing their providers as trusted experts led many patients to consult with the providers informally throughout breast cancer treatment, outside the formal referral system. Some patients even delayed initiation of treatment until they had talked with their trusted provider. Although the providers in this study viewed coordination of care as part of their role expectations, the idea of trusted expert or consultant went beyond coordination. Providers described an active, behind-the-scenes role in supporting their long-term patients through treatment decisions and processes. This significant finding should be a part of professional education for rural practitioners, and mechanisms to support this role should be implemented in practice settings.
Wide variation in patient characteristics as described by providers was found in these rural groups, showing the heterogeneity of rural people in Appalachia. For example, providers described patients who had very low reading and educational levels versus those who were highly educated, Internet savvy and quite assertive. This differs from previously published findings that describe fatalism as a common characteristic of the population.17
One consistent theme across providers and sites was the patients’ financial burden from screening and detection through follow-up phases of cancer care. Because of geographic distances from treatment centers, it was often necessary for patients to miss a day of work to obtain diagnostic tests or treatment once cancer was discovered. Providers noted that these local economic circumstances and employment situations figured heavily in their patients’ ability to obtain treatment, and they made the entire cancer experience harder for their patients. This finding underscores the importance of strengthening the safety net of rural providers and of creating workable linkages with tertiary treatment centers so that financial barriers can be addressed from the perspectives of the patient, rural providers, and providers in urban treatment centers.
The intent of the qualitative design of this study is not to generalize broadly, but to explore the perceptions and experiences of participants and lay the groundwork for the direction of future research. One limitation of the study is that the participants were from a specific geographic location; other rural providers may describe different experiences with their patients, referral systems, and desired role. Additionally, the providers were asked to consider their breast cancer patients from their own perspectives; a demographic description of their patients was not available but may have added context to the findings.
The findings have implications for the educational needs of rural providers, such as access to up-to-date cancer care information and guidelines for establishing effective referral linkages with tertiary providers. Additionally, providers perceived their “behind-the-scenes” role as trusted expert as critical to patient outcomes. These descriptions of the integration of professional and personal qualities may differ from traditional training curricula, and they should be emphasized for those new to rural practice. To further extend the knowledge base regarding the experience of rural breast cancer patients and their providers, future studies should include the perspectives of both rural breast cancer patients and specialty providers from urban treatment centers. Integration of these perspectives can lead to creative solutions for management of breast cancer care for rural women, and it may spur the development and testing of various practice models that will meet the needs of patients and both rural primary care and urban specialty providers.