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Context: Avon Foundation for Women grantees provide breast cancer services through patient navigation (PN) in an effort to alleviate barriers to care among underserved women.
Objective: To gain a better understanding of how PN programs function, this study explores variations in the use of navigators, types of services offered, description of clients they serve, tracking of treatment completion, and evaluation mechanisms.
Participants: Fifty-six Avon PN programs funded since 2008 throughout the United States were contacted.
Design: An online survey was distributed to the grantees of which 44 (81%) complete responses were collected and analyzed.
Results: Clients were racially and ethnically diverse, mostly in the 40- to 64-year old age range (64%) and 91.6% with an average income of less than $30 000. Women were either uninsured (50.7%) or receiving Medicaid (32.4%). PN programs were both community and hospital-based (22.5%); many hospitals (35.2%) were described as safety nets (eg, provide a significant level of care to low-income, uninsured, vulnerable populations). On-site services included breast screening (eg, mammography and breast ultrasound) and treatment (eg, breast surgery and radiation therapy). Some barriers to care identified by the programs included transportation, access to appointments, language, and financial issues (eg, cost of screening and treatment specifically for those uninsured). More than 39% of programs provided care across the cancer continuum.
Conclusions: Many Avon PN programs incorporated navigation services that span the cancer care continuum. They addressed disparities by offering navigation and on-site medical services to reduce multiple systems barriers and social issues related to breast care.
Breast cancer is the most common type of cancer among women and in the year 2011, it was estimated that 230,480 new cases of invasive breast cancer would occur. Moreover, in 2011, an estimated 39,520 women would die of breast cancer.1 The most disproportionately affected by breast cancer mortality are racial and ethnic minorities, those of lower socioeconomic status, and the under or uninsured.2-4 The delay between diagnosis and treatment is a contributing factor to health disparities among racially diverse and lower socioeconomic status populations.3,5-10
Barriers to care, such as delays in screening and follow-up procedures, often result in late-stage diagnoses. Such delays serve as main pathways to increased risk of advanced cancer and inevitably put individuals at higher risk for death.3 Diagnosing breast cancer through abnormal mammography follow-ups at an early stage is the first step in improving health outcomes. In general, women who have early stage or localized breast cancer have a 98% chance of surviving 5 years after diagnosis.2 Access to care alone cannot guarantee positive outcomes after a breast cancer diagnosis, but rather timely access to care can help lead to healthier outcomes.7
No single definition of patient navigation (PN) currently exists. However, PN helps fill the gap caused by health disparities by providing individual-specific assistance to reduce these barriers that prevent women from seeking and accessing breast health care and reduces delays in accessing cancer services across the continuum.11,12 Barriers that PN services address in an effort to improve the likelihood of women receiving screening and timely treatment include financial burdens, transportation issues, communication issues, and access to quality care.13,14
Programs with patient navigators vary widely in the recruitment and experience of their navigators.14,15 Wells et al12 found that navigators ranged in training from lay navigators to health professionals (ie, nurses, social workers, health educators) and their services varied from recruitment to screening, assistance in follow-up and diagnosis, and improving cancer treatment and psychosocial well-being.14 Sparse data exist that describe training of navigators and the mechanisms through which barriers are addressed among PN clients.11 Research on the effectiveness of PN programming has assessed receipt of care, utilization of services, and strengths and weaknesses of programming.10,14-18 Few national models of breast cancer PN exist, providing limited evidence as to how these programs operate. The American Cancer Society Patient Navigator Program and the National Cancer Institute Patient Navigation Program are currently the only 2 national programs examined throughout PN literature.19,20 The American Cancer Society program connects patients with cancer with a patient navigator at a cancer treatment center nationally, whereas the National Cancer Institute program focuses on testing interventions to reduce time to delivery of quality, standardized cancer care after identification of an abnormal finding. A more comprehensive exploration of multiple programs will allow for a richer analysis of the diverse range of services that programs offer and populations they serve.
Founded in 1955, the Avon Foundation for Women (Avon) is one of the leading nonprofit organizations and funding entities that serves the needs of women who are specifically battling breast cancer. Programming that is funded by Avon to any safety net program within the United States and its territories helps underserved populations gain improved access to quality health services and scientific research that enhance the field and improve upon knowledge of cancer etiology and prevention.21
This study looks to establish a better understanding of how Avon grantees provide breast cancer services through PN. The purpose of this study was to explore variations among Avon grantees in their use of navigators, types of services offered, description of clients served, tracking of treatment completion, and evaluation mechanisms.
Program directors from Avon PN programs who had been competitively selected to receive grant funding since 2008 were invited to participate in a cross-sectional, online survey that assessed their goals and different aspects of navigation. An e-mail was distributed to potential participants (as identified by Avon's grantee directory), which informed them of the study and provided a link for participation. Participants were asked to complete the survey in January and February 2011. Two reminders were sent to the participants to increase response rates. This study was approved by Emory University's Institutional Review Board and determined to be exempt for human subjects research. No institutional or organizational monies were used to fund this study.
The survey included a total of 47 multiple-choice items in which particular questions could have more than 1 response and short answer items. The survey was adapted from the 2007 Avon Foundation for Women Patient Navigators Evaluation. Major sections of the survey assessed navigator characteristics and the functionality of the PN programs. Sections included characteristics of the population served (eg, racial and age distribution, languages spoken, income distribution, insurance status); characteristics of the Avon-funded program (eg, program setting, services provided, affiliations for delivery of services); how navigation is structured in the program (eg, whether programs describe employees as patient navigators, payment mechanisms, caseload); how navigation works within the program (eg, referral process, recruitment of patients); and effectiveness of the program (eg, evaluation processes). Open-ended questions pertained to goals, barriers to goals, and mechanisms used to mitigate said barriers. Some examples of these questions were as follows: "What are the primary cultural, psychological, social or financial barriers to screening or treatment faced by your population?" and "How are the population barriers you indicated being addressed by your program?" In this article, we reported only on demographics of navigated patients, location of navigation programs and services, and client barriers.
Responses from the online survey distribution Web site, Zoomerang, were entered into Statistical Package for Social Sciences (SPSS) version 17.0 to conduct data analysis. We performed descriptive statistics (eg, frequencies and cross tabulations) of population characteristics (eg, racial and age distributions, languages spoken, insurance status) and the structural aspects of PN programs (eg, cancer continuum22 focus of program, services provided, number of patients served per navigator). A single coder analyzed data for open-ended questions by thematic analysis of codes and those data were reported as major and minor themes.
There were a total of 56 Avon-funded programs. Of these programs, 2 were excluded: 1 was excluded because it was not yet operational at the time this study began; the second program could not be contacted. Overall, there were 44 (81%) respondents to the survey, which included program managers, program directors, grants directors, and various other positions within the Avon grantees.
Navigator positions tended to be funded mostly by the Avon Foundation; however, sources of funding from other organizations were indicated as internal funding (34%), Susan G. Komen for the Cure funding (23%), other foundations (14%), other sources not listed (9%), and state agencies (7%). No navigation program received reimbursement through insurance by having navigators as part of their program. The skills and services offered by the Avon PN programs included educating their population, managing individual cases, and increasing screening promotion.
The goals of these programs focused on delivering timely access to services and care, providing education (eg, education in breast health, medical information, and resources that are available to patients with cancer), providing or assisting in establishing emotional support (eg, counseling services and peer support), guiding patients through the system, removing systems barriers, and improving screening and quality of life (specifically in terms of survivorship). Some examples of goals of these programs were to guide patients through the system, improve screening, provide timely access to services and medical care, ensure treatment completion, and educate the public.
Table 1 displays basic demographic information on the patients navigated by the grantees. Programs served racially and ethnically diverse populations that were mostly Hispanic (30%) and black or African American (31%). The age of clients was mostly in the range of 40 to 64 years (64%). A majority of clients PN programs served (92%) had an average income of less than $30 000 and were either uninsured (51%) or had access to Medicaid (32%). Immigrants (48%) and uninsured Medicaid-eligible (56%) clients were among the majority of special populations served. Moreover, clients mostly were served in urbanized areas (44%) that were defined as an area or place with a population of more than 50 000 residents.
In describing the navigators, one program indicated having someone who performed navigation under a title other than "patient navigator." A majority of programs (81%) indicated having requirements and training mechanisms for their navigators. Requirements for navigators included having a specific degree, licensure, or minimum years of experience; training in case management or internal program training was expected as well. Navigator training and experience included licensed nurses or social workers with emphasis placed on experience in case management or navigation certification/training. Furthermore, speaking all of the languages of those served was a characteristic of navigators among 6 programs. Essential skills for navigators included interpersonal skills (eg, listening) (93%), communication (eg, effectively communicating information to the client) (90%), confidentiality (eg, related to Health Insurance Portability and Accountability Act) (86%), and organization (75%).
Table 2 illustrates PN programs and services, where programs were identified as both community-based and hospital-based (22%). Programs were also identified as operating in safety net settings (35%). More than 39% of programs provided care across the cancer continuum and most navigation programs covered 50% of the screening and diagnostic services on-site. These services included mammography screening, diagnostic mammography, breast ultrasonography, and breast surgery/health center. Other services that were offered regularly but not on-site included survivorship services (51%), breast health screening (49%), and genetic testing (32%).
Almost two-thirds of the PN programs had programming specific to the treatment portion of the cancer continuum (Table 2). Of these programs, 58% offered a method of tracking-recommended treatment completion. Programs indicated an average treatment completion ranging from 70% to 99% of patients. There were few mechanisms put in place for patient follow-up after treatment completion; one of the only follow-up techniques included calls posttreatment. Other forms of follow-up included specific inquiries or concerns made after cases were closed, follow-ups at annual screenings, patient tracking and notification to navigator of changes, survivorship services, and follow-up intervals (eg, follow-up call made after 6 months and/or 1 year).
Social support was defined in terms of personal services outside of medical breast health services. These services were provided in terms of outreach/public education (58%). The most frequently mentioned skills specific to social support that were required of navigators included interpersonal skills (58%), communication skills (56%), and confidentiality (54%). Client-navigator contact was maintained mostly through in-person visits on-site (59%), telephone (58%), and accompaniment to medical and therapeutic appointments (48%).
Table 3 lists overarching themes regarding barriers to care, which included issues of transportation, access to appointments, language barriers, and financial issues (eg, cost of screening and treatment specifically for those uninsured). These themes were comments that reoccurred 5 times or more. Themes that were not as frequently mentioned but still reoccurred were lack of child care, work schedule and employment conflicts, general lack of health literacy related to breast cancer, fears related to citizenship status and mammography, mental health and substance abuse issues, lack of social support, cultural beliefs, and lack of a formal education. In spite of language being a primary barrier to care, data indicated that 34 programs do not have patient navigators who speak all of the languages spoken by the population they serve.
Reoccurring themes regarding services offered by patient navigators to address population barriers included financial support services (eg, providing vouchers, alternative funding, and financial counseling), free or discounted breast health services (eg, screenings), counseling and emotional support (eg, individualized peer counseling or group therapy and referrals), resource referrals, interpreters and bilingual staff, transportation, and community outreach events. Educating the community on breast health and providing interpreters and a bilingual staff were the most frequently reoccurring themes among ways to address barriers.
Thirty-three programs (75%) indicated that they had conducted some form of evaluation on their PN program in the past. Eighty-eight percent of programs indicated that they used in-house evaluation processes through having their own staff conduct the evaluations. Other mechanisms (27%) and personnel from colleges (21%) were also used to conduct evaluations. The topics of outcomes that were assessed included outcomes of programs (77%), outcomes of navigation (72%), and services (59%).
The focus of the overall Avon grant initiative is to assist underserved populations (eg, lower income, racial and ethnic minorities, immigrants, and the uninsured). The goals of the programs varied widely but most centered on removing systems barriers that included guiding patients through the system, providing timely access to service and care, improving screening rates, and improving treatment completion. We see these goals being addressed through the removal of individual social and systems barriers. To address multiple types of barriers, a majority of the Avon programs spanned across the cancer continuum.
Avon programs were primarily based in hospitals or community-based programs with links to medical providers allowing for many diagnostic services to be offered on-site. The availability of multiple services being offered within hospital settings could also account for the ability of more than half of the PN programs to cover the entire cancer care continuum and the large number of navigators who have health care professional backgrounds. The impact these programs could have on improving outcomes and quality of life among their patient population lies in their ability to effectively help women receive timely treatment after diagnosis. Those with nursing and social work degrees who work in clinical settings possess the same skill sets and educational qualifications of those navigators that were described by the Avon grantees. Having internal staff serve as navigators would be ideal because of their familiarity with the patient population, available resources, and the steps needed to navigate their health care facility.
We found the barriers within the Avon-funded programs to be consistent with the barriers found in other studies, including transportation, language, and inability to afford screening and treatment because of under/uninsured status.14,23,24 PN program staff have found ways to reduce multiple barriers through offering on-site services at discounted or reduced cost, which help populations who are under or uninsured and assist those with limited transportation (eg, travel from site to site for medical care would not be necessary). Finally, offering some bilingual staff and interpreters on-site services decreases the risk of facing communication issues because of language and limited health literacy barriers.7
Social support was shown as a reoccurring theme that reflected the understanding of the navigation process as not only a systems issue but also a social issue. There was an emphasis on social support being not solely about breast services but the major emotional impact that a diagnosis of cancer has on the individual and the toll that treatment can have on functioning. Moreover, the barriers faced by these women were indicative of some failure in social systems rather than medical or structural systems issues alone. Lack of child care, work conflicts, and lack of social support from families were indicated by these PN programs. Similarly, Paskett et al,15 Davis et al,25 and Yosha et al26 emphasized the critical role of navigators in offering social support in addition to informational support (ie, education), accompaniment, and instrumental support (eg, scheduling appointments, arranging for transportation).
Programs that tracked treatment completion indicated positive outcomes in their patients who worked with navigators like those found in other navigation studies.9,27 However, no information was provided on whether or not the treatment they received was timely enough to be effective. Although more than 75% of programs were conducting some type of program evaluation, no specific responses were given to indicate what type of information was collected regarding navigation and services outcomes within the Avon-funded PN programs; this could be an area for future exploration.
Our study is subject to several limitations. For example, data were based on self-report by grantee program directors or other staff, which may have not been completely accurate because direct access to all the information needed for the survey might have been limited. Quantitative and qualitative results could not be easily matched together in a way that would allow for a comparative analysis. Only inferences could be made between the reoccurring themes from the qualitative (eg, those who indicated language barriers being a primary concern) and quantitative results (eg, populations largely non-English speaking as their clients). Also, there was a broad range reported for PN programs whose patients completed recommended treatment, which is likely an overinflation of the numbers represented. Another limitation is that this is a cross-sectional snapshot on each program at one point in time. Depending on what time period was observed, results could differ. Finally, because there was only 1 coder used for the qualitative data analysis, there is no way to assess the reliability of the coding process.
Community outreach programs are using navigation to address barriers to screening and timely access to care for the grantees' clients. These data demonstrate the need for navigation programs to focus on population-specific systems and environmental changes to increase screening and follow-up.
Further research should be conducted on different populations such as immigrants and how health disparities are impacted by PN programs to address differential rates in cancer incidence, access to care, and mortality. In addition, evaluation of the navigation services provided by national navigation programs from the perspectives of patients and navigators is warranted. Few qualitative studies exist to understand the functions, processes involved in, and outcomes of navigation.26-30 The effectiveness of PN programs cannot be fully understood until patients and navigators are also interviewed or surveyed through follow-up.31 Few programs required bilingualism as a criterion of navigator eligibility. The effectiveness of how navigators serve their clients is an area that could be further studied because language is a major barrier between patient and accessing the health care system. Research in this area could focus on language barrier solutions outside of navigators' bilingual skills. Given the diverse populations served in clinical settings, having multiple navigators fluent in every language represented may not be feasible. Also, in-depth research on the impact of navigation could be explored qualitatively and quantitatively. More research on the spectrum and role of navigation programs will strengthen our understanding of how they can impact the continuum of cancer care.
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25. Davis C, Darby K, Likes W, Bell J. Social workers as patient navigators for breast cancer survivors: what do African-American medically underserved women think of this idea? Soc Work Health Care. 2009;48(6):561-578. [Context Link]
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Avon Foundation for Women; breast cancer; health disparities; patient navigation
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