Financial burden among metastatic breast cancer patients: a qualitative inquiry of costs, financial assistance, health insurance, and financial coping behaviors.

PURPOSE: Metastatic breast cancer (MBC) patients often face substantial financial burden due to prolonged and expensive therapy. However, in-depth experiences of financial burden among MBC patients are not well understood. METHODS: Qualitative interviews were conducted to describe the experiences of financial burden for MBC patients, focusing on the drivers of financial burden, their experience using their health insurance, accessing financial assistance, and any resulting cost-coping behaviors. Interviews were transcribed and qualitatively analyzed using a descriptive phenomenological approach to thematic analysis. RESULTS: A total of n = 11 MBC patients or caregiver representatives participated in the study. MBC patients were on average 50.2 years of age (range: 28-65) and 72.7% non-Hispanic White. MBC patients were diagnosed as metastatic an average of 3.1 years (range: 1-9) before participating in the study. Qualitative analysis resulted in four themes including (1) causes of financial burden, (2) financial assistance mechanisms, (3) health insurance and financial burden, and (4) cost-coping behaviors. Both medical and non-medical costs drove financial burden among participants. All participants reported challenges navigating their health insurance and applying for financial assistance. Regardless of gaining access to assistance, financial burden persisted for nearly all patients and resulted in cost-coping behaviors. CONCLUSION: Our findings suggest that current systems for health insurance and financial assistance are complex and difficult to meet patient needs. Even when MBC patients accessed assistance, excess financial burden persisted necessitating use of financial coping-behaviors such as altering medication use, maintaining employment, and taking on debt.

Assessing the pre-implementation context for financial navigation in rural and non-rural oncology clinics.

Background: Financial navigation (FN) is an evidence-based intervention designed to address financial toxicity for cancer patients. FN's success depends on organizations' readiness to implement and other factors that may hinder or support implementation. Tailored implementation strategies can support practice change but must be matched to the implementation context. We assessed perceptions of readiness and perceived barriers and facilitators to successful implementation among staff at nine cancer care organizations (5 rural, 4 non-rural) recruited to participate in the scale-up of a FN intervention. To understand differences in the pre-implementation context and inform modifications to implementation strategies, we compared findings between rural and non-rural organizations. Methods: We conducted surveys (n = 78) and in-depth interviews (n = 73) with staff at each organization. We assessed perceptions of readiness using the Organizational Readiness for Implementing Change (ORIC) scale. In-depth interviews elicited perceived barriers and facilitators to implementing FN in each context. We used descriptive statistics to analyze ORIC results and deductive thematic analysis, employing a codebook guided by the Consolidated Framework for Implementation Research (CFIR), to synthesize themes in barriers and facilitators across sites, and by rurality. Results: Results from the ORIC scale indicated strong perceptions of organizational readiness across all sites. Staff from rural areas reported greater confidence in their ability to manage the politics of change (87% rural, 76% non-rural) and in their organization's ability to support staff adjusting to the change (96% rural, 75% non-rural). Staff at both rural and non-rural sites highlighted factors reflective of the Intervention Characteristics (relative advantage) and Implementation Climate (compatibility and tension for change) domains as facilitators. Although few barriers to implementation were reported, differences arose between rural and non-rural sites in these perceived barriers, with non-rural staff more often raising concerns about resistance to change and compatibility with existing work processes and rural staff more often raising concerns about competing time demands and limited resources. Conclusions: Staff across both rural and non-rural settings identified few, but different, barriers to implementing a novel FN intervention that they perceived as important and responsive to patients' needs. These findings can inform how strategies are tailored to support FN in diverse oncology practices.

Knowledge, Attitudes, and Resources of Frontline Oncology Support Personnel Regarding Financial Burden in Patients With Cancer.

PURPOSE: Financial navigation services support patients with cancer and address the direct and indirect financial burden of cancer diagnosis and treatment. These services are commonly delivered through a variety of frontline oncology support personnel (FOSP) including navigators, social workers, supportive care providers, and other clinic staff, but the perspective of FOSPs is largely absent from current literature on financial burden in oncology. We surveyed a national sample of FOSPs to understand their perspectives on patient financial burden, resource availability, and barriers and facilitators to assisting patients with cancer-related financial burden. METHODS: We used Qualtrics online survey software and recruited participants using multiple professional society and interest group mailing lists. Categorical responses were described using frequencies, distributions of numeric survey responses were described using the median and IQR, and two open-ended survey questions were categorized thematically using a priori themes, allowing additional emergent themes. RESULTS: Two hundred fourteen FOSPs completed this national survey. Respondents reported a high awareness of patient financial burden and felt comfortable speaking to patients about financial concerns. Patient assistance resources were commonly available, but only 15% described resources as sufficient for the observed needs. A substantial portion of respondents reported moral distress related to this lack of resources. CONCLUSION: FOSPs, who already have requisite knowledge and comfort in discussing patient financial needs, are a critical resource for mitigating cancer-related financial burden. Interventions should leverage this resource but prioritize transparency and efficiency to reduce the administrative and emotional toll on the FOSP workforce and reduce the risk of burnout.

Lessening the Impact of Financial Toxicity (LIFT): a protocol for a multi-site, single-arm trial examining the effect of financial navigation on financial toxicity in adult patients with cancer in rural and non-rural settings.

BACKGROUND: Almost half of the patients with cancer report cancer-related financial hardship, termed "financial toxicity" (FT), which affects health-related quality of life, care retention, and, in extreme cases, mortality. This increasingly prevalent hardship warrants urgent intervention. Financial navigation (FN) targets FT by systematically identifying patients at high risk, assessing eligibility for existing resources, clarifying treatment cost expectations, and working with patients and caregivers to develop a plan to cope with cancer costs. This trial seeks to (1) identify FN implementation determinants and implementation outcomes, and (2) evaluate the effectiveness of FN in improving patient outcomes. METHODS: The Lessening the Impact of Financial Toxicity (LIFT) study is a multi-site Phase 2 clinical trial. We use a pre-/post- single-arm intervention to examine the effect of FN on FT in adults with cancer. The LIFT trial is being conducted at nine oncology care settings across North Carolina in the United States. Sites vary in geography (five rural, four non-rural), size (21-974 inpatient beds), and ownership structure (governmental, non-profit). The study will enroll 780 patients total over approximately 2 years. Eligible patients must be 18 years or older, have a confirmed cancer diagnosis (any type) within the past 5 years or be living with advanced disease, and screen positive for cancer-related financial distress. LIFT will be delivered by full- or part-time financial navigators and consists of 3 components: (1) systematic FT screening identification and comprehensive intake assessment; (2) connecting patients experiencing FT to financial support resources via trained oncology financial navigators; and (3) ongoing check-ins and electronic tracking of patients' progress and outcomes by financial navigators. We will measure intervention effectiveness by evaluating change in FT (via the validated Comprehensive Score of Financial Toxicity, or COST instrument) (primary outcome), as well as health-related quality of life (PROMIS Global Health Questionnaire), and patient-reported delayed or forgone care due to cost. We also assess patient- and stakeholder-reported implementation and service outcomes post-intervention, including uptake, fidelity, acceptability, cost, patient-centeredness, and timeliness. DISCUSSION: This study adds to the growing evidence on FN by evaluating its implementation and effectiveness across diverse oncology care settings. TRIAL REGISTRATION: ClinicalTrials.gov NCT04931251. Registered on June 18, 2021.

Financial Assistance Processes and Mechanisms in Rural and Nonrural Oncology Care Settings.

PURPOSE: Patients with cancer are at heightened risk of experiencing financial hardship. Financial navigation (FN) is an evidence-based approach for identifying and addressing patient and caregiver financial needs. In preparation for the implementation of a multisite FN intervention, we describe existing processes (ie, events and actions) and mechanisms (ie, how events work together) connecting patients to financial assistance, comparing rural and nonrural practices. METHODS: We conducted in-depth, semistructured interviews with stakeholders (ie, administrators, providers, and staff) at each of the 10 oncology care sites across a single state (five rural and five nonrural practices). We developed process maps for each site and analyzed stakeholder perspectives using thematic analysis. After reporting findings back to stakeholders, we synthesized themes and process maps across rural and nonrural sites separately. RESULTS: Eighty-three stakeholders were interviewed. We identified six core elements of existing financial assistance processes across all sites: distress screening (including financial concerns), referrals, resource connection points, and pharmaceutical, insurance, and community/foundation resources. Processes differed by rurality; however, facilitators and barriers to identifying and addressing patient financial needs were consistent. Open communication between staff, providers, patients, and caregivers was a primary facilitator. Barriers included insufficient staff resources, challenges in routinely identifying needs, inadequate preparation of patients for anticipated medical costs, and limited tracking of resource availability and eligibility. CONCLUSION: This study identified a clear need for systematic implementation of oncology FN to equitably address patient and caregiver financial hardship. Results have informed our current efforts to implement a multisite FN intervention, which involves comprehensive financial toxicity screening and systematization of intake and referrals.

Core functions of a financial navigation intervention: An in-depth assessment of the Lessening the Impact of Financial Toxicity (LIFT) intervention to inform adaptation and scale-up in diverse oncology care settings.

Background: Lessening the Impact of Financial Toxicity (LIFT) is an intervention designed to address financial toxicity (FT) and improve cancer care access and outcomes through financial navigation (FN). FN identifies patients at risk for FT, assesses eligibility for financial support, and develops strategies to cope with those costs. LIFT successfully reduced FT and improved care access in a preliminary study among patients with high levels of FT in a single large academic cancer center. Adapting LIFT requires distinguishing between core functions (components that are key to its implementation and effectiveness) and forms (specific activities that carry out core functions). Our objective was to complete the first stage of adaptation, identifying LIFT core functions. Methods: We reviewed LIFT's protocol and internal standard-operating procedures. We then conducted 45-90 min in-depth interviews, using Kirk's method of identifying core functions, with key LIFT staff (N = 8), including the principal investigators. Interviews focused on participant roles and intervention implementation. Recorded interviews were transcribed verbatim. Using ATLAS.ti and a codebook based on the Model for Adaptation Design and Impact, we coded interview transcripts. Through thematic analysis, we then identified themes related to LIFT's intervention and implementation core functions. Two report back sessions with interview participants were incorporated to further refine themes. Results: Six intervention core functions (i.e., what makes LIFT effective) and five implementation core functions (i.e., what facilitated LIFT's implementation) were identified to be sufficient to reduce FT. Intervention core functions included systematically cataloging knowledge and tracking patient-specific information related to eligibility criteria for FT relief. Repeat contacts between the financial navigator and participant created an ongoing relationship, removing common barriers to accessing resources. Implementation core functions included having engaged sites with the resources and willingness necessary to implement FN. Developing navigators' capabilities to implement LIFT-through training, an established case management system, and connections to peer navigators-were also identified as implementation core functions. Conclusion: This study adds to the growing evidence on FN by characterizing intervention and implementation core functions, a critical step toward promoting LIFT's implementation and effectiveness.

¿Ahora qué?: Cultural Adaptation of a Cancer Survivorship Intervention for Latino/a Cancer Survivors.

OBJECTIVE: With a steadily increasing number of Latino/a cancer survivors, there is a need for supportive care programs for this underserved survivor subgroup. METHODS: In this study, the authors culturally adapted an evidence-based survivorship program, Cancer Transitions: Moving Beyond Treatment (CT) for this population. Guided by Barrera and Castro's heuristic model for cultural adaptation of interventions, we conducted five focus groups (FG) among Latino/a cancer survivors (n = 54) in several US sites to inform the preliminary adaptation of program materials. We conducted four additional FGs (n = 38) to obtain feedback on adapted materials. RESULTS: Common themes from initial FGs were related to program delivery and logistics, and general recommendations for CT modification. Program adaptations addressed information needs, including health care system navigation, employment concerns, and sexuality. Other adaptations included an emphasis on family, spirituality, culturally appropriate translation and features, and role plays. Participants in the second round of FGs confirmed adaptations incorporated earlier findings and suggested additional refinements. CONCLUSION: This project helps guide the cultural adaptation of survivorship programs for Latino/a cancer survivors.

Using Telehealth to Train Providers of a Cancer Support Intervention.

BACKGROUND: Group interventions are effective for addressing the transition from cancer treatment to survivorship but are not widely available outside of urban areas. In addition, minimal training is available for group facilitators outside of the mental healthcare discipline. Telehealth as a medium can facilitate conversation and interactive learning and make learning accessible to individuals in areas that lack resources for traditional classroom teaching. Little is known, however, regarding the feasibility and acceptability of a telehealth training program for group leaders. This project aimed to investigate the utility of a telehealth training program for the delivery of a copyrighted, manualized psychosocial group intervention, Cancer Transitions: Moving Beyond Treatment. MATERIALS AND METHODS: Nine group leaders attended one in-person orientation, four telehealth training classes, and four telehealth supervision sessions, completing self-report measures of content knowledge, quality satisfaction, and self-confidence. Following the completion of their last Cancer Transitions facilitation, group leaders participated in a focus group to provide qualitative feedback regarding their experiences in training for and leading the respective groups in eight urban and rural North Carolina communities. RESULTS: Group leaders rated the training program highly across the domains of content knowledge, quality satisfaction, and self-confidence. Satisfaction with the technology itself was equivocal. CONCLUSIONS: Telehealth represents a feasible avenue for training and supporting leaders of psychosocial interventions. In addition, telehealth is particularly well suited to the need for training group leaders in areas outside urban centers or academic communities.

Implementing a one-on-one peer support program for cancer survivors using a motivational interviewing approach: results and lessons learned.

Peer Connect matches cancer survivors and caregivers (guides) with those currently experiencing cancer-related issues seeking support (partners). Motivational interviewing (MI)-based communication skills are taught to provide patient-centered support. There is little guidance about MI-based applications with cancer survivors who may have multiple coping needs. This paper addresses the results and lessons learned from implementing Peer Connect. Thirteen cancer survivors and two caregivers received a 2-day MI, DVD-based training along with six supplemental sessions. Nineteen partners were matched with guides and received telephone support. Evaluation included guide skill assessment (Motivational Interviewing Treatment Integrity Code) and 6-month follow-up surveys with guides and partners. Guides demonstrated MI proficiency and perceived their training as effective. Guides provided on average of five calls to each partner. Conversation topics included cancer fears, family support needs, coping and care issues, and cancer-related decisions. Partners reported that guides provided a listening ear, were supportive, and nonjudgmental. Limited time availability of some guides was a challenge. MI can provide support for cancer survivors and caregivers without specific behavioral concerns (e.g., weight and smoking). An MI support model was both feasible and effective and can provide additional support outside of the medical system.

Process of diffusing cancer survivorship care into oncology practice.

The LIVESTRONG Centers of Excellence were funded to increase the effectiveness of survivorship care in oncology practice. This study describes the ongoing process of adopting and implementing survivorship care using the framework of the diffusion of innovation theory of change. Primary data collection included telephone interviews with 39 members from the eight centers and site visits. Organizational characteristics, overall progress, and challenges for implementation were collected from proposals and annual reports. Creating an awareness of cancer survivorship care was a major accomplishment (relative advantage). Adoption depended on the fit within the cancer center (compatibility), and changed over time based on trial and error (trialability). Implementing survivorship care within the existing culture of oncology and breaking down resistance to change was a lengthy process (complexity). Survivorship care became sustainable as it became reimbursed, and more new patients were seen (observability). Innovators and early adopters were crucial to success. Diffusion of innovation theory can provide a strategy to evaluate adoption and implementation of cancer survivorship programs into clinical practice.

The use of motivational interviewing to promote peer-to-peer support for cancer survivors.

Motivational interviewing (MI) as a counseling approach has gained empirical support for its use in a number of settings and for a variety of behaviors. However, the majority of practitioners trained to use MI have been professionals rather than laypeople. This article presents the rationale, design, and evaluation of an MI-based training for cancer survivors and caregivers to deliver peer support. The training and evaluation of the peers ("guides") to encourage practice and increase research knowledge for using MI-based peer support models for cancer care are discussed. Thirteen cancer survivors and two caregivers received two-day DVD-based MI training, as well as supplemental monthly sessions for six months. The guides demonstrated MI proficiency as assessed by the MI Treatment Integrity scale and other process evaluation assessments. MI can be adapted to train laypeople to provide support for groups such as cancer survivors.

Adult cancer survivorship care: experiences from the LIVESTRONG centers of excellence network.

BACKGROUND: The objectives of this study were to characterize survivorship models of care across eight LIVESTRONG Survivorship Center of Excellence (COE) Network sites and to identify barriers and facilitators influencing survivorship care. METHODS: Using the framework of the Chronic Care Model (CCM), quantitative and qualitative methods of inquiry were conducted with the COEs. Methods included document reviews, key informant telephone interviews with 39 participants, online Assessment of Chronic Illness Care (ACIC) surveys with 40 participants, and three site visits. RESULTS: Several overarching themes emerged in qualitative interviews and were substantiated by quantitative methods. Health system factors supporting survivorship care include organization and leadership commitment and program champions at various levels of the health care team. System barriers include reimbursement issues, lack of space, and the need for leadership commitment to support changes in clinical practices as well as having program "champions" among clinical staff. Multiple models of care include separate survivorship clinics and integrated models as well as consultative models. COEs' scores on the ACIC survey showed overall "reasonable support" for survivorship care; however, the clinical information system domain was least developed. Although the ACIC findings indicated "reasonable support" for self-management, the qualitative analysis revealed that self-management support was largely limited to health promotion provided in clinic-based education and counseling sessions, with few COEs providing patients with self-management tools and interventions. CONCLUSIONS: The CCM framework captured experiences and challenges of these COEs and provided insight into the current state of survivorship care in the context of National Cancer Institute-designated comprehensive cancer centers. Findings showed that cancer patients and providers could benefit from clinical information systems that would better identify candidates for survivorship care and provide timely information. In addition, a crucial area for development is self-management support outside of clinical care. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors may benefit from learning about the experience and challenges faced by the eight LIVESTRONG Centers of Excellence in developing programs and models for cancer survivorship care, and these findings may inform patient and caregiver efforts to seek, evaluate, and advocate for quality survivorship programs designed to meet their needs.