Effects of an outreach and internal navigation program on breast cancer diagnosis in an urban cancer center with a large African-American population

Abstract

BACKGROUND.

Compared with white women, African-American (AA) women who are diagnosed with breast cancer experience an excess in mortality. To improve outcomes, the authors implemented community education and outreach initiatives in their cancer center, at affiliated primary care sites, and in the surrounding communities. They then assessed the effectiveness of these outreach initiatives and internal patient navigation on stage of diagnosis.

METHODS.

This cross-sectional study was an analysis of all women with breast cancer who were diagnosed and/or treated in the years from 2001 through 2004. The outreach initiatives were implemented in 2001; 125 trained Community Health Advocates (CHAs) provided educational programs to the community, and Patient Navigators communicated directly with patients to encourage screening, diagnostic procedures, and treatment.

RESULTS.

In total, 487 patients were diagnosed/treated from 2001 through 2004. Since 2001, there were 1148 community interventions by CHAs with an estimated program attendance of >10,000 participants. In the interval from 2001 through 2004, the proportion of stage 0 (in situ) breast cancers increased from 12.4% (n = 14) to 25.8% (n = 33; P < .005), and there was a decline in stage IV invasive breast cancers from 16.8% (n = 19) to 9.4% (n = 12; P < .05).

CONCLUSIONS.

The outreach initiatives and internal patient navigation appear to have improved stage at diagnosis. To determine whether specific patients presented earlier as a result of specific community outreach initiatives, prospective work is underway to measure the effects of these interventions on potential stage migration. Similarly, prospective data are being collected to determine whether Patient Navigators influence treatment and appointment adherence as well as the underlying reasons for barriers to specific interventions in this underserved minority population. Cancer 2008. © 2008 American Cancer Society.

It is anticipated that, in 2007, nearly 40,910 women in the U.S. will die from breast cancer and a disproportionate number will be African-American (AA) women.1 This excess in mortality is a reflection of the marked poorer survival experienced by AA women that has persisted for decades.2 Major reasons for this disparity have been attributed to the increased number of AA women diagnosed at a later stage of disease and at younger ages, when breast cancers tend to be more aggressive and result in poorer outcomes. Treatment differences, including nonreceipt of recommended diagnostic, surgical, and systemic treatments, also are a contributing factor.3

In response to the disparity of stage presentation in AA women, our AVON Comprehensive Breast Center (AVONCBC) at Grady Memorial Hospital in Atlanta, Georgia, set forth to impact the stage of diagnosis for this largely minority and underinsured or uninsured patient population that is served. To target the disparities in this urban healthcare setting, a program was created with intentions to raise breast cancer awareness, increase mammography screening rates, and enhance the process of receiving prevention and treatment services. The program has 2 components: Community Health Advocacy and Internal Patient Navigation.

The objective of this study was to perform a cross-sectional study examining disease stage at diagnosis during the years of early implementation and the follow-up of our Community Outreach and Internal Navigation Programs and to determine whether there was a measurable impact of the programs.

MATERIALS AND METHODS

The Community Outreach and Internal Navigation Programs began with informal training in 2001. In 2002, formal training programs commenced. To investigate the impact of these programs, we performed a cross-sectional study by retrospectively reviewing the records of all women who had breast cancer diagnosed and/or treated in the years 2001 through 2004 at the AVONCBC at Grady Memorial Hospital, Atlanta, Georgia. Data were obtained from the hospital tumor registry and were augmented by the Surveillance, Epidemiology, and End Results database.

Beginning in 2001, with support from the AVON Foundation, 125 Community Health Advocates (CHAs) were hired and eventually received formal training as outlined in the Educational Program described in Table 1. A major goal of the CHA Program is to provide educational sessions in the community that will increase breast cancer awareness and encourage screening for breast cancer. CHAs encourage mammography screening and teach the importance of breast self-examinations. CHAs instruct participants to see a trained healthcare provider for any new breast clinical findings.

Table 1. Educational Components of the Community Health Advocate and Patient Navigator Training Programs

BSE indicates breast self-examination; CBE, clinical breast examination.

Community Health Advocate Training Program

Lesson 1: United States/Georgia Facts and Figures on Breast Cancer

Lesson 2: Anatomy of the Breast and Risk Factors

Lesson 3: Early Detection Practices: BSE, CBE, Mammography

Lesson 4: Breast Cancer: Signs and Symptoms, Diagnosis

Lesson 5: Breast Cancer Staging, Treatment, and New Technologies

Lesson 6: Clinical Trials: What Are They?

Lesson 7: Health Disparities: African-American Women in Cancer

Lesson 8: Planning Your Program or Event

Patient Navigator Training Program

Additional topics

Lesson 9: Effective Listening

Lesson 10: Cycle of Hope

Lesson 11: Coping With the Loss of a Patient

Lesson 12: Patient Navigation

The CHA Community Educational Programs take the form of interactive presentations at churches, schools, workplaces, or health fairs to encourage those in attendance to overcome their fears regarding screening and diagnosis. Adherence to breast cancer screening often is impeded by personal or cultural misconceptions and barriers. The primary role of the CHAs is to increase the number of women (especially minority, medically underserved, underinsured, or uninsured women) who will consider and undergo screening by mammography. This may have a favorable impact on the stage at diagnosis of breast cancer and, ultimately, may improve outcomes. Furthermore, the education provided to the community by CHAs serves as an attempt to empower the community with the knowledge to make better decisions concerning their healthcare.

During the study period, 20 CHAs received further training to become Patient Navigators (PNs). The PNs, in collaboration with the AVONCBC staff, communicate directly with any patient who has been diagnosed with breast cancer. They encourage patients to follow-up with recommended medical care, particularly those patients who are hesitant to pursue appropriate care. In conjunction with social services and case managers, the PNs also help patients access needed resources to help them overcome barriers to care (including financial concerns, transportation needs, physical needs, communication needs, difficulties with disease management, and needs for support services). The PNs provide support to our breast cancer patients throughout the treatment process. Some of the PNs also are involved with encouraging women to show up for their mammograms, especially those women who have been identified as missing several appointments. Through this mechanism, PNs also may contribute to decreasing the stage at presentation for patients with newly diagnosed breast cancer in our system.

RESULTS

Since the inception of the CHA and PN programs in 2001 through 2004, in total, there were 1148 community interventions by CHAs with an estimated attendance of greater than 10,000 participants. During this same interval (from 2001 through 2004), 487 patients were identified, diagnosed, and treated for breast cancer at the AVONCBC. The population from this urban hospital setting consisted of 89% AA women, 5% white women, 2% Hispanic women, and 4% women of other race/ethnicity. Figure 1 illustrates all patients by stage and year of diagnosis.

Figure 1. All patients from 2001 to 2004 by stage of disease and year of diagnosis.

Figure 2 highlights the significant increase in the proportion of stage 0 (in situ) breast cancers from 12.4% (n = 14) to 25.8% (n = 33; p<.005). There was a simultaneous decline in the proportion of stage IV invasive breast cancers from 16.8% (n = 19) to 9.4% (n = 12; p<.05).

Figure 2. Stage migration from 2001 to 2004 with increases in stage 0 breast cancer patients and decreases in stage IV breast cancer patients noted.

DISCUSSION

Factors that contribute to both later stage ay diagnosis and poorer outcome among AA women include differences in diagnosis, tumor characteristics, and treatment.4–17 These differences are related to both patient- and system-level factors, including socioeconomic and demographic factors, cultural beliefs, healthcare access, comorbid conditions, and tumor biology.6, 17–28 Figure 3 illustrates how these influences interact and, in some areas, overlap, leading to a 36% excess mortality risk that is observed in AA women.29, 30

Figure 3. Paradigm for explaining reasons for cancer disparities.

In the paradigm depicted in Figure 3, the term ‘environment’ is used broadly to include external social or system factors that preclude early identification and treatment of breast cancer. One main area in this category is access to high-quality care that encompasses standard-of-care recommendations and opportunities to participate in clinical research trials. AA ethnicity is associated with later stage presentation that, in part, can be the result of difficulty in accessing the healthcare system in a timely fashion for financial and other reasons. In a recent study, 34% of AA women received inadequate mammography screening before their diagnosis of breast cancer.31 Reasons for inadequate mammography screening that include access-to-care issues fall under the category of ‘environmental’ causes and contribute to the higher prevalence of advanced breast tumors in AA women. In the AVONCBC at Grady Memorial Hospital, CHAs teach in the community about the benefits of screening and early detection. PNs also assist the case manager with work on mammography scheduling; and, through this mechanism, they help to assure patients timely access to care.

Another integral factor that may be implicated in excessive mortality involves tumor characteristics or ‘biology’ accounting for differences in outcomes from breast cancer. It is known that AA women are diagnosed more commonly with higher grade tumors, positive lymph node status, and estrogen receptor (ER)-negative/progesterone receptor (PR)-negative tumors.3, 32, 33 In addition, p53 mutations or over expression,34–36 and the basal-like subtype (ER-negative/PR-negative/HER2-negative)34, 37 are more prevalent in breast tumors among AA women. The challenges in this genetic category of causes for disparities are to continue to enforce screening recommendations for earlier diagnosis and to develop targeted therapies for treatment. More important, because these cancers can present between screening schedules,38–43 other screening strategies that identify these highly aggressive tumors earlier need to be developed and/or considered if indicated.5, 44 In addition, treatment data suggest that AA women do not receive adequate chemotherapy dosing because of underlying neutropenia45 and that their tumors more often are intrinsically resistant to systemic therapies, suggesting that new therapies with activity against the basal-like subtype of breast cancer is a priority.46 These are yet other biologic examples that may lead to differences in outcomes from cancer therapy.

In the AVONCBC at Grady Memorial Hospital, the PNs encourage patients to keep appointments. Each patient with newly diagnosed breast cancer has the opportunity to be assigned a PN. The PNs maintain contact with patients from postdiagnosis through the duration of the treatment process to encourage and facilitate patients to seek follow-up care as recommended. This patient tracking process includes surgical, medical oncology, and radiation oncology interventions. The PNs also are in contact with patients over the telephone or meet patients in the clinic during appointments if necessary. In the breast clinic, the PNs also directly interact with physicians, nursing staff, and social workers to assist in identifying and overcoming barriers to follow-up.

Finally, lifestyle factors, such as comorbidities (obesity as 1 example), unhealthy exposures, and personal decisions regarding the use of care, also influence outcomes from breast cancer. Providing culturally relevant education and improved support systems that including outreach and navigation may influence a patient's decision to accept appropriate prevention, screening, diagnostic studies, and treatment regimens for cancer care.7 The goal of our CHA and PN Program is to decrease disparities by improving access to care and dispelling fears among patients so that they seek those appropriate care options. A major role that the PNs play is to dispel fears of treatment and encourage compliance with care recommendations. This is important, because avoidance of appropriate healthcare leads to poorer outcomes from breast cancer.

Later stage of presentation was not unique to the urban population in the current study; in fact, similar urban hospitals have faced the same problem. The Harlem Hospital Center in New York was the first to recognize an analogous situation in which lower income and under-uninsured women tended to present with later stage cancers, ultimately leading to a poorer prognosis and outcome.47 A pioneer Patient Navigation Program was established in Harlem and, soon after, many other comparable urban settings followed the Harlem paradigm.48 Our AVONCBC recognized in early 2000 the disproportional differences in stage of breast cancer and implemented the Community Education and Outreach Program, which has 2 components: the CHA Program and the PN Program (for training guidelines, see Table 1).

To quantify the effect of the program over time, a cross-sectional analysis was performed examining disease stage at presentation by year from 2001 through 2004. During that period, there was a near doubling of stage 0 breast cancers along with a significant decrease of stage IV breast cancers. This reciprocal deviation of stage 0 versus stage IV breast cancers has implications on prognosis and, ultimately, on outcomes for these women if the recommended treatment guidelines are followed. Moreover, these data demonstrate that the community education and outreach initiatives may have had an impact on the observed stage migration.

A limitation of the current study was inherent in the research design. Because this was a cross-sectional study, the results did not allow us to establish a causal relation between the community education and outreach initiatives and the effect on stage migration in this largely AA population of women. Prospective work is currently in progress to determine whether a particular patient who attended an intervention was diagnosed at an earlier stage. Similarly, prospective data are being collected to determine whether PNs influenced treatment and appointment adherence and to identify the underlying reasons for barriers to specific interventions in this underserved minority population.

Although there has been an apparent increase in early-stage detection rates coupled with a decrease in stage IV detection rates, a priority after diagnosis in our PN program is to continue to work with patients to accept treatment recommendations as discussed and reviewed in our weekly patient quality care review conference. In a recent study of patients with stage III breast cancer who were treated in our AVONCBC from 2000 through 2005, 20.5% of patients refused chemotherapy, and 35.2% refused radiation treatment.49 In a study of our AVONCBC patient population diagnosed between 2003 and 2004, we observed that 30% of our patients who were diagnosed with the aggressive triple-negative (ER-negative/PR-negative/HER2-negative) breast cancer subtype did not receive chemotherapy, and a minority of those with ER-positive or PR-positive tumors were documented as having received some form of systemic hormone therapy.50 The vital role of the CHAs in encouraging mammography screening and stressing the importance of early diagnosis should be emphasized jointly with the PN roles in encouraging acceptance of and adherence to treatment standards. It is clear that the continued important work of the CHAs and PNs; the multidisciplinary breast tumor conferences; and the interactive dialogues between CHAs, PNs, social workers, nursing and support staff, and physicians will be crucial for improving breast cancer outcomes for all patients and particularly for the underserved.