Lay Navigation Program Research Articles

Eliminating racial disparities in endometrial cancer clinical trial enrollment in the Deep South: a pathway to equity

<h3>Objectives:</h3> Major racial underrepresentation onto gynecologic oncology clinical trials has been a systemic impediment towards racial equity in care. Previous work demonstrated a 9.8-fold lower enrollment of black patients onto national Gynecologic Oncology Group (GOG) trials compared to whites. In the Deep South, multiple barriers exist that further exacerbate this disparity. Our objective was to investigate clinical trial enrollment at our institution after the implementation of patient-based programs designed specifically to enhance minority enrollment in clinical trials. <h3>Methods:</h3> An intentional multifaceted intervention was created to address Black patient enrollment onto clinical trials. A lay navigation program was established at our cancer center in conjunction with oncology care models focused on improving quality of care by layering proper education of our patients on the risks and benefits of clinical trials in cancer. A diverse lay navigation workforce was hired that mirrored the demographics of our catchment area. We performed a retrospective cohort study of all endometrial cancer patients diagnosed and treated at our institution between 2012 and 2018. Expected and observed white: black ratios of racial participation in clinical trials were calculated utilizing CDC age-adjusted endometrial cancer incidence for race. <h3>Results:</h3> A total of 1,021 patients with endometrial cancer had adequate follow-up for evaluation of this study. Per our institutional goals for oncology care models, each new endometrial cancer patient was assigned a lay navigator with clinical trial education module required for all patients. Over the study period, 84 patients were enrolled onto clinical trials. Patients were similar in age, BMI, race, morbidity, stage and tumor histology. A total of 23 out of 277 black women (8.3%) and 61 of 718 white women (8.5%) with endometrial cancer participated in clinical trials. Accounting for age-adjusted incidence of endometrial cancer in the United States, observed enrollment of Black women was statistically similar to expected enrollment (1.03 fold lower than the expected p=0.77). Using regional "Deep South" data, we observed a 1.15 fold higher enrollment compared to expected enrollment for black patients (p=0.54). For the entire cohort, a progression-free survival (PFS) disadvantage was demonstrated for black patients compared to whites (14 vs 20 months, respectively p=0.02). Stratifying by clinical trial enrollment, PFS equity was achieved for black patients compared to white patients (13 vs 14 months, p=0.28) (Figure 1). <h3>Conclusions:</h3> Clinical trial inequities can be overcome in the Deep South with specific interventions aimed at improving care for black women. Particularly encouraging are the equal progression free survival data for those enrolled onto clinical trials regardless of race.

Impact of lay navigation on utilization and Medicare spending for cancer survivorsin the "Deep South".

Though lay navigation programs have proven beneficial for individuals during cancer treatment, little is known about the effects of lay navigation on health care utilization and Medicare spending among older adults during cancer survivorship. This retrospective cohort study used administrative claims data to evaluate a lay navigation program implemented from 2012 to 2015 at 12 academic and community cancer centers in the Southeast. Medicare beneficiaries age ≥65 years navigated during survivorship were compared to propensity score-matched, non-navigated cancer survivors. Quarterly trends in Medicare spending were estimated using repeated measures mixed models. Rate ratios (RRs) and 95% confidence intervals (CIs) were estimated using repeated measures generalized linear models for quarterly emergency room (ER) visits and hospitalizations. Medicare spending for navigated (n = 3255) versus non-navigated older cancer survivors (n = 3255) was initially higher but declined faster by $513 per patient per quarter (95% CI -$616, -$410). Per patient per quarter risk of ER visits decreased by 11% (RR 0.89, 95% CI 0.86, 0.92) and hospitalizations decreased by 16% (RR 0.84, 95% CI 0.81, 0.88) over time comparing navigated versus non-navigated patients. Similar results were seen for patients enrolled in navigation post-treatment (N = 1893). In older cancer survivors receiving care in the Deep South, patients receiving lay navigation compared to those non-navigated had significant reductions in Medicare spending, hospitalizations, and ER visits. Though much emphasis has been placed on lay navigation during initial cancer treatment, navigation is needed throughout survivorship due to the high costs and health care utilization that persist post-treatment.

Negotiating Lay and Clinical Issues: Implementing a Lay Navigation Program in Cancer Care.

Patients with cancer face daunting coordination problems at a vulnerable time. Lay navigation programs offer 1 approach to address these problems, but how to best implement these programs presents challenges. We sought to describe those implementation challenges at 1 academic cancer center to inform future efforts. We performed a mixed methods study using standard implementation outcomes 1 year after program initiation. Quantitative data from the electronic medical record and qualitative data from in-depth interviews, focus groups, and ethnographic observations were included in analyses. The study took place at a National Cancer Institute-designated comprehensive cancer center across 12 tumor-specific clinics. Supportive care concerns, scheduling, and clinical-related issues were the most frequent issues navigators encountered. Effective navigation required continuous, time-consuming, invisible work, including building and maintaining a broad knowledge base of resources and health system processes, as well as cultivating relationships with diverse and changing clinical teams. The acceptability and appropriateness of lay navigator activities were mixed among clinic and social work staff, related to negotiating lines between clinical and nonclinical care. After 1 year of implementation, lay navigators still found it difficult to interpret and prioritize complex patient needs in a way that all clinical staff found appropriate. Negotiating these issues has made it difficult to develop the strong relationships with clinical teams that are needed for an integrated approach to patient care. To successfully coordinate patient care, it seems that lay navigation programs should be integrated with clinical teams to provide more seamless patient care.

Effectiveness of a Lay Navigation Program in an Academic Cancer Center.

A navigation program with lay navigators that targets patients with cancer who are receiving multiple treatment modalities was launched with the goal of improving care coordination. Pseudo-randomization and mixed methods were used to evaluate the program: patients with even-numbered medical records were assigned to navigation help, and patients with odd-numbered medical records made up the control group. Eligible patients were those scheduled to receive at least two treatment modalities. Intent-to-treat, as-treated, and high-user cohorts with propensity matched controls were used to assess the outcomes: patient experience, emergency room (ER) use, and unplanned hospitalizations. In-depth patient interviews explored how and why patients interacted with the navigator program and overall patient experience. Marginally lower incidence rate ratios (IRRs) for both ER visits (IRR, 1.17; 95% CI, 1.00 to 1.36) and unplanned hospitalizations (IRR, 1.18; 95% CI, 0.97 to 1.43) occurred in as-treated patients who used navigation help and who lived within 50 miles of Stanford Hospital compared with their matched controls; other cohort analyses had similar results. Survey scores for patients who received help with navigation did not differ significantly from those for corresponding controls in any of the analytic cohorts. Patient interviews suggested that the navigation program had low visibility among patients and that lay navigators drove use of the program. Patient-reported positive experiences included getting help with complex scheduling, alleviating anxiousness through access to information and educational resources, and getting help with activities outside traditional health care; negative experiences stemmed from having expectations that were not met. Marginally lower rates of ER visits and unplanned hospitalizations for a small subset of patients, low penetration of the navigation program, and mixed comments from patient interviews suggest that a navigation program with a broad scope that targets a large population is not effective. Modifying the program to have a narrower scope of practice may help better target anxious or high-risk patients.

Patient navigation for complex care patients in the emergency department: a survey of oncology patient navigators

Emergency departments (EDs) care for patients with complex medical problems who require a coordinated care approach. Patient navigation services, which help assist patients with care coordination, have been widely implemented for patients with cancer in a variety of settings, but this approach has not been described in the ED. We sought to better understand the potential for ED-based patient navigation services from the perspective of individuals currently providing these services in other settings. A survey was conducted of participants at a regional conference for patient navigation services of patients with cancer. Eighty-five completed surveys were returned representing a response rate of 64%. Ninety-one percent of responses indicated that lay navigation services would be either very helpful or moderately helpful for either ED patients with cancer or for ED patients aged 65years or older with or without cancer in an ED. Coordination of care, the provision of emotional support and educational resources relevant to their medical conditions, and providing companionship to older patients during the ED visits were identified as priorities for an ED-based lay navigation program. The lack of navigators with experience in the ED, the physical space constraints of the ED, and the time constraints associated with an ED visit were identified as the primary barriers to establishing a lay navigation program in the ED. These results identify the care priorities and barriers to be overcome during the development of an ED-based lay navigation program from the perspective of those currently providing patient navigator services.

Geriatric syndromes and association with distress in older cancer patients.

189 Background: Geriatric syndromes are multifactorial conditions affecting the elderly that are associated with decreased quality of life and poor outcomes. We sought to quantify the prevalence of geriatric syndromes in a group of navigated cancer patients and identify conditions associated with distress. Methods: Distress assessments were conducted between January 2012 and December 2015 on enrollment into the PCCP, a lay-navigation program that serves Medicare recipients in the UAB Health System Cancer Community Network. Assessments were made using a modified Distress Tool, which captures sources of distress in multiple domains. We identified questionnaire items related to common geriatric syndromes including functional decline, sensory impairment, cognitive and mood changes, sleep problems, incontinence, pressure ulcers, and malnutrition. Prevalence of geriatric syndromes was indicated by reported distress for an item that mapped to one of the above syndromes. Results: 8,014 patients were surveyed; 53 % of patients were 65- 74 yoa with 47% &gt; 74 yoa while 52% were female. The most common cancer types were breast (18%), lung (17%), and gastrointestinal (16%). Of all surveyed patients, 1,779 (22%) reported distress related to at least one geriatric syndrome. The most common complaint was decline in functional ability relating to ADLs (11%) and IADLs (7%). Conclusions: Geriatric syndromes, such as functional disability, contribute to distress in older patients with cancer patients. Early screening and identification may lead to timely intervention to help improve quality of life. Further research is needed to describe the relationship between these syndromes and health outcomes, such as their association with health care utilization in older adults with cancer.

Healthcare utilization, Medicare spending, and sources of patient distress identified during implementation of a lay navigation program for older patients with breast cancer.

Despite benefits for patients, sustainability of breast cancer navigation programs is challenging due to the lack of reimbursement for navigators. This analysis describes distress reported by breast cancer patients to navigators and the impact of navigation on healthcare utilization for older adults with breast cancer. We conducted a retrospective cohort study of Medicare administrative claims data and patient-reported distress assessments. The primary outcome was Medicare spending per beneficiary per quarter. Secondary outcomes included (1) the number of hospitalizations or ER visits in each quarter; (2) distress levels; and (3) causes of distress reported by patients to their navigators. A subset analysis was conducted for stage I/II/III versus stage IV patients. 776 navigated and 776 control patients were included in the analysis. The average age at diagnosis was 74years; 13% of the subjects were African American; 95% of patients had stage I-III. Medicare spending declined faster for the navigated group than the matched comparison group by $528 per quarter per patient (95% CL -$667, -$388). Stage I/II/III navigated patients showed a statistically significant decline in Medicare spending, ER visits, and hospitalizations over time compared to the matched comparison group. No differences were observed for stage IV patients. Eighteen percent of patients reported moderate distress. Informational and physical distress were more common in late stage than in early-stage breast cancer. Lay navigation reduced healthcare utilization in older adults with breast cancer, with the greatest impact observed in early-stage breast cancer patients.

Lay navigation program saves costs in cancer patients

Lay navigation program saves costs in cancer patients

Mobility Impairments (MI) and Associated Distress Domains in African American and Caucasian Older Adults with Cancer in a Multisite Lay Navigation Program (LNP) (S793)

•Identify the incidence of mobility impairments in onco-geriatric in lay navigation program.•Describe the associated distress level and domains from data collected by distress thermometer for African Americans and Caucasians enrolled in a lay navigation program. Mobility impairments (MI) have a strong negative influence on quality of life (QOL). The Patient Care Connect Program (PCCP) trained 39 lay navigators (LNs) on fundamentals of onco-geriatrics, navigation, and using a Distress Thermometer (DT) to guide patient interactions across the cancer continuum. To describe (1) incidence of mobility impairments (MI), and (2) associated distress level and domains among African Americans (AA) and Caucasians enrolled in the PCCP LNs routinely utilized a modified National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT) in the LNP. Patients were 65 years old and older, AA or Caucasian, and diagnosed with cancer in 2008-2015 in five southeastern states. We analyzed data from DTs administered in the quarter of enrollment. MI was defined as any difficulty with balance/walking/mobility, getting around inside/outside, moving in/out of chair/bed. An average score >3 indicated high distress. Distress causes were categorized in 6 domains: emotional, information, cognitive, practical, family, and spiritual. Chi square tests were used to determine differences across patients with and without MI, and across races. Among 4916 patients, 10% reported MI, the third highest ranked distress item after pain and fatigue. Compared to patients without MI, those with MI were more likely to report high stress (51.9% vs. 22.1%), and distress in each domains (p<.0001): emotional (41.7% vs 14.1%), information (39.9% vs, 24.2%), cognitive (29.1% vs 3.9%), practical (27.2% vs. 10.8%), family (6.8% vs. 2.4%), and spiritual (4.4% vs 0.7%). AAs reported more MI than Caucasians (13.2% AAs, 9.7% Caucasians, p = 0.005). Similar associations of MI with distress level and domains were found for AAs and Caucasians. AA onco-geriatric patients have a higher incidence of MI that impact well-being.

Abstract P6-11-02: Hospitalizations and costs during Implementation of a lay navigation program for older patients with breast cancer in the deep south

Abstract Background: Patient-centered strategies are needed to enhance the value of cancer care particularly at the end of life. Lay navigators (LN) can be trained to provide an extra layer of support for cancer patients from diagnosis through survivorship or end of life. We hypothesized that integrating LNs into the care team would reduce healthcare utilization and cost for patients with cancer, including those with breast cancer. Methods: A prospective, observational study of Medicare claims data was conducted of beneficiaries ≥ 65 years old diagnosed with cancer after 2008 who received care within the UAB Health System Cancer Community Network (12 cancer centers of varying size located in AL, MS, TN, GA, and FL). The first breast cancer (BC) patient was enrolled in navigation in April 2013, and ∼18% of BC patients were navigated by the end of 2014. For this analysis, we report on the subset of patients with BC. The outcomes of interest were calculated per quarter from 2012-2014: (1) the proportion of patients with at least 1 hospitalization, (2) the proportion of the 492 deceased BC patients with a hospitalization in the last 30 and 14 days of life and (3) the Total costs for Medicare, excluding prescription drug costs. We used general linear models to evaluate changes in both health care utilization and cost over time, adjusting for age, sex, cancer stage, phase of care, and navigation group. Differential effects for navigated and non-navigated groups were tested with a group*time interaction. Healthcare utilization estimates are presented as Incidence Rate Ratios (IRR), and costs for Medicare as parameter estimates (β) in terms of dollar amounts. Results: 4835 BC patients received care from 2012-2014: 622 received navigation services. 14.2 % of navigated BC patients were stage III/IV, compared to 9.33% of non-navigated patients. The proportion of hospitalizations trended downward from 7.9% in quarter 1 (Q1) 2012 to 5.7% in Q4 of 2014 (IRR 0.965, p =0.14), with similar decreases for navigated and non-navigated patients (IRR= 1.00, p &amp;gt; 0.05). Hospitalization in the last 30 days and last 14 days of life were 49.7% and 29.3%, respectively, with no between groups difference. Costs per beneficiary per quarter decreased overall from $4,161 in Q1 2012 to $3,010 in Q4 2014 (p &amp;lt;0.0001). In adjusted analysis, the navigated patients had an average $577 greater decline per quarter than the non-navigated patients (βNavigated=-$636; βnon-Navigated=-$59; p&amp;lt;0.0001). Conclusions: Medicare costs declined during implementation of a lay navigation program, with greater reductions for navigated patients than non-navigated BC patients. Overall hospitalizations also declined, yet rates remain high for breast cancer patients at the end of life. Integration of LNs should be considered by health systems aiming to transition to value-based healthcare delivery. The project described was supported by Grant Number 1C1CMS331023 from the Department of Health and Human Services, Centers for Medicare &amp; Medicaid Services. The contents of this abstract are solely the responsibility of the authors and do not necessarily represent the official views of the U.S. Department of Health and Human Services or any of its agencies. Citation Format: Rocque GB, Kvale EA, Jackson BE, Kenzik K, Lisovicz N, Demark-Wahnefried W, Meneses KM, Taylor RA, Acemgil A, Chambless C, Li Y, Martin M, Fouad M, Pisu M, Partridge EE. Hospitalizations and costs during Implementation of a lay navigation program for older patients with breast cancer in the deep south. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P6-11-02.

Abstract PR04: Functional mobility disparities in older African American women with cancer in a multisite lay navigation program in the Deep South

Abstract The purpose of this abstract is to (1) describe the incidence of functional mobility impairments among African American (AA) females enrolled in the Patient Care Connect Program (PCCP); (2) report the impact of a lay navigation program (LNP) on identifying and resolving problems with functional mobility in the PCCP population; and (3) explore the future potential of a LNP in oncogeriatrics (65 years of age or older with cancer). Background: The geriatric (65 years of age or older) population in the United States (US) is estimated to increase from 16% in 2013 to 20% by 2030, when 70% of all cancers are expected to be diagnosed in this population. By 2050, 14% of the US geriatric population is predicted to be AA. The PCCP is a Centers for Medicare &amp; Medicaid Services (CMS) LNP located in twelve cancer programs across five states in the Deep South (AL, MS, TN, FL, GA). The LNP is used to identify and intervene early in patient's self-reported distress and barriers to care. Methods: Thirty-nine lay navigators (LNs) were educated about the fundamentals of oncogeriatrics, communication, and use of the Distress Thermometer (DT) to guide patient conversations. The National Comprehensive Cancer Network (NCCN) DT was modified with a focus on collecting patients' self-reported global distress level on a thermometer image and distress items in 7 domains (i.e., practical, family problems, information, cognitive, physical, emotional, and spiritual/religious problems or concerns). Based on the items identified from the DT tool, the LN identifies resources to address these items and empowers the patient to access the resources. For each patient, the LN also records all associated high-risk diseases (i.e., congestive heart failure, diabetes mellitus, stroke, chronic obstructive pulmonary disease, emphysema, interstitial lung disease, renal disease). Findings: Interim data from 3,500 participants completing the DT tool in the PCCP indicates that mobility is the third highest ranked distress item after pain and fatigue. Of females, 18 % of the AAs report mobility problems compared to the 12% in the Caucasian population. Of these females, 40% of the AAs have at least one or more high risk disease compared to 37% of the Caucasian population. Of the females with mobility problems, 2.6% of the AAs have 3 or more high-risk diseases compared to 1.4 % of the Caucasians. In the females reporting mobility problems, 27.4% of them requested assistance from the LN to address this problem and 86% of the time the patient reported back that the LN's assistance resolved the problem. Conclusions: AA oncogeriatric females have a greater number of high risk diseases and functional mobility limitations that affect their health, compared to Caucasians. By identifying functional mobility limitations early, proactive interventions can be implemented, monitored, and adjusted to modify or resolve mobility problems that can lead to disability and health disparities in oncogeriatric females. LNs can effectively use the DT to identify functional mobility problems and empower female oncogeriatrics to resolve them; improving health and decreasing health disparities. Data will be used to continue expanding the knowledge base in the area of oncogeriatrics and lay navigation, refine the oncogeriatric conceptual model within the PCCP, and translate the findings into clinical practice; improving health and decreasing health disparities. This publication was made possible by Grant Number 1C1CMS331023 from the Department of Health and Human Services, Centers for Medicare &amp; Medicaid Services. The contents of this publication are solely the responsibility of the authors and do not necessarily represent the official views of the U.S. Department of Health and Human Services or any of its agencies. This abstract was also presented as Poster A9. Citation Format: Richard Taylor, Aras Acemgil, Karen Meneses, Gabrielle Rocque, Maria Pisu, Xin Wang, Wendy Demark-Wahnefried, Edward Partridge. Functional mobility disparities in older African American women with cancer in a multisite lay navigation program in the Deep South. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr PR04.

Trends in resource utilization and costs during implementation of a lay navigation program.

6502 Background: Lay navigators provide support to patients from diagnosis through survivorship or end of life. We hypothesized that integrating lay navigators into the care team would lead to redu...