Barriers and Facilitators to Cervical Cancer Screening, Diagnosis, Follow-Up Care and Treatment: Perspectives of Human Immunodeficiency Virus-Positive Women and Health Care Practitioners in Tanzania.

BACKGROUND: This study was conducted to identify barriers and facilitators to cervical cancer screening, diagnosis, follow-up care, and treatment among human immunodeficiency virus (HIV)-infected women and clinicians and to explore the acceptability of patient navigators in Tanzania. MATERIALS AND METHODS: In 2012, we conducted four focus groups, two with HIV-positive women and two with clinicians who perform cervical cancer screening, diagnosis, follow-up care, and treatment. Transcriptions were analyzed using thematic analysis. RESULTS: Findings from the patient focus groups indicate the prevalence of fear and stigma surrounding cervical cancer as well as a lack of information and access to screening and treatment. The clinician focus groups identified numerous barriers to screening, diagnosis, follow-up care, and treatment. Participants in both types of groups agreed that a patient navigation program would be an effective way to help women navigate across the cancer continuum of care including screening, diagnosis, follow-up care, and treatment. CONCLUSION: Given the fear, stigma, misinformation, and lack of resources surrounding cervical cancer, it is not surprising that patient navigation would be welcomed by patients and providers. IMPLICATIONS FOR PRACTICE: This article identifies specific barriers to cervical cancer screening and treatment from the perspectives of both clinicians and patients in Tanzania and describes the acceptability of the concept of patient navigation.

Acceptance of peer navigators to reduce barriers to cervical cancer screening and treatment among women with HIV infection in Tanzania.

OBJECTIVE: To identify barriers to cervical cancer screening and treatment, and determine acceptance toward peer navigators (PNs) to reduce barriers. METHODS: A cross-sectional study was conducted among women with HIV infection aged 19 years or older attending HIV clinics in Dar es Salaam, Tanzania, between May and August 2012. Data for sociodemographic characteristics, barriers, knowledge and attitude toward cervical cancer screening and treatment, and PNs were collected by questionnaire. RESULTS: Among 399 participants, only 36 (9.0%) reported previous cervical cancer screening. A higher percentage of screened than unscreened women reported being told about screening by someone at the clinic (25/36 [69.4%] vs 132/363 [36.4%]; P=0.002), knew that screening was free (30/36 [83.3%] vs 161/363 [44.4%]; P<0.001), and obtained "good" cervical screening attitude scores (17/36 [47.2%] vs 66/363 [18.2%]; P=0.001). Most women (382/399 [95.7%]) did not know about PNs. When told about PNs, 388 (97.5%) of 398 women said they would like assistance with explanation of medical terms, and 352 (88.2%) of 399 said they would like PNs to accompany them for cervical evaluation and/or treatment. CONCLUSION: Use of PNs was highly acceptable and represents a novel approach to addressing barriers to cervical cancer screening and treatment.

Resource Use and Medicare Costs During Lay Navigation for Geriatric Patients With Cancer.

IMPORTANCE: Lay navigators in the Patient Care Connect Program support patients with cancer from diagnosis through survivorship to end of life. They empower patients to engage in their health care and navigate them through the increasingly complex health care system. Navigation programs can improve access to care, enhance coordination of care, and overcome barriers to timely, high-quality health care. However, few data exist regarding the financial implications of implementing a lay navigation program. OBJECTIVE: To examine the influence of lay navigation on health care spending and resource use among geriatric patients with cancer within The University of Alabama at Birmingham Health System Cancer Community Network. DESIGN, SETTING, AND PARTICIPANTS: This observational study from January 1, 2012, through December 31, 2015, used propensity score-matched regression analysis to compare quarterly changes in the mean total Medicare costs and resource use between navigated patients and nonnavigated, matched comparison patients. The setting was The University of Alabama at Birmingham Health System Cancer Community Network, which includes 2 academic and 10 community cancer centers across Alabama, Georgia, Florida, Mississippi, and Tennessee. Participants were Medicare beneficiaries with cancer who received care at participating institutions from 2012 through 2015. EXPOSURES: The primary exposure was contact with a patient navigator. Navigated patients were matched to nonnavigated patients on age, race, sex, cancer acuity (high vs low), comorbidity score, and preenrollment characteristics (costs, emergency department visits, hospitalizations, intensive care unit admissions, and chemotherapy in the preenrollment quarter). MAIN OUTCOMES AND MEASURES: Total costs to Medicare, components of cost, and resource use (emergency department visits, hospitalizations, and intensive care unit admissions). RESULTS: In total, 12 428 patients (mean (SD) age at cancer diagnosis, 75 (7) years; 52.0% female) were propensity score matched, including 6214 patients in the navigated group and 6214 patients in the matched nonnavigated comparison group. Compared with the matched comparison group, the mean total costs declined by $781.29 more per quarter per navigated patient (ß = -781.29, SE = 45.77, P < .001), for an estimated $19 million decline per year across the network. Inpatient and outpatient costs had the largest between-group quarterly declines, at $294 and $275, respectively, per patient. Emergency department visits, hospitalizations, and intensive care unit admissions decreased by 6.0%, 7.9%, and 10.6%, respectively, per quarter in navigated patients compared with matched comparison patients (P < .001). CONCLUSIONS AND RELEVANCE: Costs to Medicare and health care use from 2012 through 2015 declined significantly for navigated patients compared with matched comparison patients. Lay navigation programs should be expanded as health systems transition to value-based health care.

Implementation and Impact of Patient Lay Navigator-Led Advance Care Planning Conversations.

CONTEXT: Advance care planning (ACP) improves alignment between patient preferences for life-sustaining treatment and care received at end of life (EOL). OBJECTIVES: To evaluate implementation of lay navigator-led ACP. METHODS: A convergent, parallel mixed-methods design was used to evaluate implementation of navigator-led ACP across 12 cancer centers. Data collection included 1) electronic navigation records, 2) navigator surveys (n = 45), 3) claims-based patient outcomes (n = 820), and 4) semistructured navigator interviews (n = 26). Outcomes of interest included 1) the number of ACP conversations completed, 2) navigator self-efficacy, 3) patient resource utilization, hospice use, and chemotherapy at EOL, and 4) navigator-perceived barriers and facilitators to ACP. RESULTS: From June 1, 2014 to December 31, 2015, 50 navigators completed Respecting Choices® First Steps ACP Facilitator training. Navigators approached 18% of patients (1319/8704); 481 completed; 472 in process; 366 declined. Navigators were more likely to approach African American patients than Caucasian patients (20% vs. 14%, P < 0.001). Significant increases in ACP self-efficacy were observed after training. The mean score for feeling prepared to conduct ACP conversations increased from 5.6/10 to 7.5/10 (P < 0.001). In comparison with patients declining ACP participation (n = 171), decedents in their final 30 days of life who engaged in ACP (n = 437) had fewer hospitalizations (46% vs. 56%, P = 0.02). Key facilitators of successful implementation included physician buy-in, patient readiness, and prior ACP experience; barriers included space limitations, identifying the "right" time to start conversations, and personal discomfort discussing EOL. CONCLUSION: A navigator-led ACP program was feasible and may be associated with lower rates of resource utilization near EOL.

The Patient Care Connect Program: Transforming Health Care Through Lay Navigation.

The Patient Care Connect Program (PCCP) is a lay patient navigation program, implemented by the University of Alabama at Birmingham Health System Cancer Community Network. The PCCP's goal is to provide better health and health care, as well as to lower overall expenditures. The program focuses on enhancing the health of patients, with emphasis on patient empowerment and promoting proactive participation in health care. Navigator training emphasizes palliative care principles and includes development of skills to facilitate advance care planning conversations. Lay navigators are integrated into the health care team, with the support of a nurse supervisor, physician medical director, and administrative champion. The intervention focuses on patients with high needs to reach those with the greatest potential for benefit from supportive services. Navigator activities are guided by frequent distress assessments, which help to identify patient concerns across multiple domains, triage patients to appropriate resources, and ultimately overcome barriers to health care. In this article, we describe the PCCP's development, infrastructure, selection and training of lay navigators, and program operations.

Patient Navigation As a Model to Increase Participation of African Americans in Cancer Clinical Trials.

PURPOSE: Less than 10% of patients enrolled in clinical trials are minorities. The patient navigation model has been used to improve access to medical care but has not been evaluated as a tool to increase the participation of minorities in clinical trials. The Increasing Minority Participation in Clinical Trials project used patient navigators (PNs) to enhance the recruitment of African Americans for and their retention in therapeutic cancer clinical trials in a National Cancer Institute-designated comprehensive cancer center. METHODS: Lay individuals were hired and trained to serve as PNs for clinical trials. African American patients potentially eligible for clinical trials were identified through chart review or referrals by clinic nurses, physicians, and social workers. PNs provided two levels of services: education about clinical trials and tailored support for patients who enrolled in clinical trials. RESULTS: Between 2007 and 2014, 424 African American patients with cancer were referred to the Increasing Minority Participation in Clinical Trials project. Of those eligible for a clinical trial (N = 378), 304 (80.4%) enrolled in a trial and 272 (72%) consented to receive patient navigation support. Of those receiving patient navigation support, 74.5% completed the trial, compared with 37.5% of those not receiving patient navigation support. The difference in retention rates between the two groups was statistically significant (P < .001). Participation of African Americans in therapeutic cancer clinical trials increased from 9% to 16%. CONCLUSION: Patient navigation for clinical trials successfully retained African Americans in therapeutic trials compared with non-patient navigation trial participation. The model holds promise as a strategy to reduce disparities in cancer clinical trial participation. Future studies should evaluate it with racial/ethnic minorities across cancer centers.

Guiding Lay Navigation in Geriatric Patients With Cancer Using a Distress Assessment Tool.

BACKGROUND: There is growing interest in psychosocial care and evaluating distress in patients with cancer. As of 2015, the Commission on Cancer requires cancer centers to screen patients for distress, but the optimal approach to implementation remains unclear. METHODS: We assessed the feasibility and impact of using distress assessments to frame lay navigator interactions with geriatric patients with cancer who were enrolled in navigation between January 1, 2014, and December 31, 2014. RESULTS: Of the 5,121 patients enrolled in our lay patient navigation program, 4,520 (88%) completed at least one assessment using a standardized distress tool (DT). Navigators used the tool to structure both formal and informal distress assessments. Of all patients, 24% reported distress scores of 4 or greater and 5.5% reported distress scores of 8 or greater. The most common sources of distress at initial assessment were pain, balance/mobility difficulties, and fatigue. Minority patients reported similar sources of distress as the overall program population, with increased relative distress related to logistical issues, such as transportation and financial/insurance questions. Patients were more likely to ask for help with questions about insurance/financial needs (79%), transportation (76%), and knowledge deficits about diet/nutrition (76%) and diagnosis (66%) when these items contributed to distress. CONCLUSIONS: Lay navigators were able to routinely screen for patient distress at a high degree of penetration using a structured distress assessment.

Expanding Cervical Cancer Screening and Treatment in Tanzania: Stakeholders' Perceptions of Structural Influences on Scale-Up.

UNLABELLED: Tanzania has the highest burden of cervical cancer in East Africa. This study aims to identify perceived barriers and facilitators that influence scale-up of regional and population-level cervical cancer screening and treatment programs in Tanzania. Convenience sampling was used to select participants for this qualitative study among 35 key informants. Twenty-eight stakeholders from public-sector health facilities, academia, government, and nongovernmental organizations completed in-depth interviews, and a seven-member municipal health management team participated in a focus group discussion. The investigation identified themes related to the infrastructure of health services for cervical cancer prevention, service delivery, political will, and sociocultural influences on screening and treatment. Decentralizing service delivery, improving access to screening and treatment, increasing the number of trained health workers, and garnering political will were perceived as key facilitators for enhancing and initiating screening and treatment services. In conclusion, participants perceived that system-level structural factors should be addressed to expand regional and population-level service delivery of screening and treatment. IMPLICATIONS FOR PRACTICE: Tanzanian women have a high burden of cervical cancer. Understanding the perceived structural factors that may influence screening coverage for cervical cancer and availability of treatment may be beneficial for program scale-up. This study showed that multiple factors contribute to the challenge of cervical cancer screening and treatment in Tanzania. In addition, it highlighted systematic developments aimed at expanding services. This study is important because the themes that emerged from the results may help inform programs that plan to improve screening and treatment in Tanzania and potentially in other areas with high burdens of cervical cancer.

Knowledge, attitudes, and practices of underserved women in the rural South toward breast cancer prevention and detection.

The goal of this study was to understand the unique needs and barriers to breast cancer control among African American women in the rural South. This population experiences barriers that surpass that of other minorities. Researchers conducted 6 focus groups to assess barriers of minority women in Mississippi toward breast cancer prevention and clinical trials. These women had little knowledge of treatment options and negative perceptions of screening and clinical trial participation. This research equips others to identify new health education strategies. Conclusions also provide insight into prevention for other minority populations, such as Latina, Asian, and American Indian women.

Breast cancer fatalism: the role of women's perceptions of the health care system.

Cancer fatalism, which can be understood as the belief that cancer is a death sentence, has been found to be a deterrent to preventive cancer screening participation. This study examines factors associated with breast cancer fatalism among women. We analyzed data from a 2003 survey of women 40 years of age. The survey collected information about respondents' knowledge and attitudes regarding breast health. Analyses compared the characteristics of women who reported and those who did not report a fatalistic attitude. Women with a fatalistic attitude were more likely to be African American, to have a family history of breast cancer, to rate their quality of care as fair or poor, to believe that not much could be done to prevent breast cancer, to believe that breast cancer could not be cured if found early, and to believe that treatment could be worse than the disease.

The Deep South Network for cancer control. Building a community infrastructure to reduce cancer health disparities.

Given the recent advances in cancer treatment, cancer disparity between whites and African-Americans continues as an unacceptable health problem. African-Americans face a considerable disparity with regard to cancer incidence, survival, and mortality when compared with the majority white population. On the basis of prior research findings, the Deep South Network (DSN) chose to address cancer disparities by using the Community Health Advisor (CHA) model, the Empowerment Theory developed by Paulo Freire, and the Community Development Theory to build a community and coalition infrastructure. The CHA model and empowerment theory were used to develop a motivated volunteer, grassroots community infrastructure of Community Health Advisors as Research Partners (CHARPs), while the coalition-building model was used to build partnerships within communities and at a statewide level. With 883 volunteers trained as CHARPs spreading cancer awareness messages, both African-Americans and whites showed an increase in breast and cervical cancer screening utilization in Mississippi and Alabama. In Mississippi, taking into account the increase for the state as a whole, the proportion that might be attributable to the CHARP intervention was 23% of the increase in pap smears and 117% of the increase in mammograms. The DSN has been effective in raising cancer awareness, improving both education and outreach to its target populations, and increasing the use of cancer screening services. The National Cancer Institute has funded the Network for an additional 5 years. The goal of eliminating cancer health disparities will be pursued in the targeted rural and urban counties in Mississippi and Alabama using Community-Based Participatory Research. Cancer 2006. (c) 2006 American Cancer Society.

The community health advisor program and the deep South network for cancer control: health promotion programs for volunteer community health advisors.

The Community Health Advisor program is a proven, community-driven health promotion program that identifies and trains natural helpers who then seek to improve the health of individuals and their communities. This article details the basis of the Community Health Advisor model and describes early pilot programs in the Mississippi Delta. Also described is the formation of the Community Health Advisor Network, which provides technical assistance to Community Health Advisor programs and the proliferation of Community Health Advisor programs nationally. Specifically, details are presented of the modification of the model for the Deep South Network for Cancer Control and of early findings showing a decrease in health disparities in Alabama.

African American community health advisors trained as research partners: recruitment and training.

The African American community has played an influential role in generating change. Grass-roots organizations and concerned individuals can be included in programs designed to increase cancer awareness and cancer early detection practices to ultimately eliminate cancer disparities. The utilization of a formalized Community Health Advisors program can be an infrastructure by which effective cancer prevention and control programs can be conducted in underserved African American communities. The purpose of this article is to outline the steps necessary to develop an infrastructure for recruitment and training of grass-root African Americans to serve as Community Health Advisors trained as Research Partners.