Primary Care Provider Visits Among Cancer Survivors 5-7 Years Postdiagnosis.

PURPOSE: Cancer survivors experience better outcomes when primary care providers (PCPs) are engaged in their care. Nearly all survivors have a PCP engaged in their care in the initial 5 years postdiagnosis, but little is known about sustained PCP engagement. We assessed PCP engagement in survivors' care 5-7 years postdiagnosis and characterized survivors most vulnerable to loss to PCP follow-up. METHODS: We linked electronic health record ambulatory care and cancer registry data from an National Cancer Institute-Designated Comprehensive Cancer Center to identify eligible survivors (≥18 years; diagnosed with breast, colorectal, or uterine cancer; had an in-network PCP). We used multiple logistic regression to assess associations between survivor demographics, clinical factors, and health care utilization and odds of sustained PCP engagement. RESULTS: In 5-7 years postdiagnosis, PCPs were engaged in care for 43% of survivors. Survivors with sustained PCP-engagement were on average 4.6 years older than those without (P < .0001); survivors had 1.36 greater odds of having regular PCP visits for each decade increase in age on cancer diagnosis (P = .0030). Survivors were less likely to be lost to PCP follow-up if diagnosed at an earlier stage with odds at 0.57 and 0.10 for stage I and stage IV, respectively (P = .0005), and had 2.70 greater odds of engagement in care with at least one oncology visit annually 5-7 years postdiagnosis (P < .0001). CONCLUSION: Sustained PCP engagement is endorsed as critical by survivors, PCPs, and oncologists. We found most survivors were lost to PCP follow-up 5-7 years postdiagnosis. Our study is among the first to contribute empirical evidence of survivors being lost in transition. Findings from this study demonstrate the need to bridge gaps in long-term care for cancer survivors.

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.

Fertility Preservation Decisional Turning Points for Adolescents and Young Adults With Cancer: Exploring Alignment and Divergence by Race and Ethnicity.

PURPOSE: For adolescents and young adults (AYAs) with cancer, fertility preservation (FP) decision making is complex and distressing. Racial/ethnic minority (REM) AYAs experience disparities in FP awareness, uptake, and outcomes. A turning point (TP) is a point of reflection, change, or decisive moment(s) resulting in changes in perspectives or trajectories. To enhance understanding of AYAs' diverse experiences, this study examined alignment and/or divergence of FP decisional TPs among non-Hispanic White (NHW) AYAs and REM AYAs. METHODS: Qualitative semistructured interviews were conducted in person, by video, or phone with 36 AYAs (20 NHW and 16 REM [nine Hispanic and seven Black/multiracial Black). The constant comparative method was used to identify and analyze themes illustrating participants' conceptualization and/or experience of FP decisional TPs. RESULTS: Seven thematic TPs emerged: (1) emotional reaction to discovering FP procedures exist; (2) encountering unclear or dismissive communication during initial fertility conversations with health care providers; (3) encountering direct and supportive communication during initial fertility conversations with health care providers; (4) participating in critical family conversations about pursuing FP; (5) weighing personal desire for a child against other priorities/circumstances; (6) realizing FP is not feasible, and (7) experiencing unanticipated changes in cancer diagnosis or treatment plans/procedures. TP variations include REM participants reported dismissive communication and suggested cost was prohibitive. NHW participants emphasized more forcefully that biological children may become a future priority. CONCLUSION: Understanding how clinical communication and priorities/resources may vary for NHW and REM AYAs can inform future interventions aimed at reducing health disparities and enhancing patient-centered care.

Factors Associated with Delaying and Forgoing Care Due to Cost among Long-term, Appalachian Cancer Survivors in Rural North Carolina.

Background: Little research exists on delayed and forgone health and mental health care due to cost among rural cancer survivors. Methods: We surveyed survivors in 7 primarily rural, Appalachian counties February to May 2020. Univariable analyses examined the distribution and prevalence of delayed/forgone care due to cost in the past year by independent variables. Chi-square or Fisher's tests examined bivariable differences. Logistic regressions assessed the odds of delayed/forgone care due to cost. Results: Respondents (n=428), aged 68.6 years on average (SD: 12.0), were 96.3% non-Hispanic white and 49.8% female; 25.0% reported delayed/forgone care due to cost. The response rate was 18.5%. The proportion of delayed/forgone care for those aged 18-64 years was 46.7% and 15.0% for those aged 65+ years (P<0.0001). Females aged 65+ years (OR: 2.00; CI: 1.02-3.93) had double the odds of delayed/forgone care due to cost compared to males aged 65+ years. Conclusion: About one in four rural cancer survivors reported delayed/forgone care due to cost, with rates approaching 50% in survivors aged <65 years. Impact: Clinical implications indicate the need to: 1) ask about the impact of care costs, and 2) provide supportive services to mitigate effects of treatment costs, particularly for younger and female survivors.

A comparison of survey incentive methods to recruit rural cancer survivors into cancer care delivery research studies.

Unconditional (upfront) incentives are proposed to improve acceptance of cancer research among underrepresented, racial/ethnic minority populations, but few studies have tested incentive strategies among rural cancer survivors. Descriptive statistics summarized demographic characteristics of survey respondents, and response rates by arm were compared using Chi-square tests. We compared upfront ($2) and response-based ($10 conditional) incentives in a mailed survey of adult post-treatment rural survivors. Individuals meeting eligibility criteria from the electronic medical record (n = 2,830) were randomized into two incentive arms (n = 1,414 for the upfront arm and n = 1,416 for the contingent arm). Of the total delivered, presumed eligible participants (n = 1,304 upfront arm; n = 1,317 contingent arm), 67.8% were aged 65y+, 49.8% were female, and 95.1% were non-Hispanic white. The response rate for all participants was 18.5%. We received eligible surveys from 281 rural survivors in the first arm (response rate: 21.5%); and 205 surveys in the second arm (response rate: 15.6%). Participants who received the upfront incentive had a higher response rate than those receiving a response-based incentive, X2 (1, 2,621) = 15.53, p < 0.0001. Incentivizing survey completion with an upfront $2 bill encouraged a higher survey response rate; other supplemental strategies are needed to achieve a higher response rate for this population.

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.

Strategies used by breast cancer survivors to address work-related limitations during and after treatment.

BACKGROUND: The primary objective of this exploratory study was to delineate the broad range of adjustments women breast cancer survivors draw upon to minimize cancer-related limitations at the workplace. The study also analyzed whether survivors used strategies to address work-related limitations in isolation or in combination with other strategies, and whether they used formal or informal strategies. METHODS: Semi-structured, in-depth interviews were conducted with 14 women who were employed at the time of diagnosis of breast cancer and who continued to work during treatment or returned to work. Interviews were conducted 3 to 24 months after diagnosis. An iterative process was used to systematically analyze the data (the transcripts) using qualitative methods. FINDINGS: Participants who worked during or after treatment adjusted their work schedule, performed fewer or other tasks, modified or changed their work environment, reduced non-work activities at the workplace, used cognitive prompts, and acted preemptively to make work tasks manageable after their return to work. Survivors used multiple adjustments and drew upon both formal and informal tactics to minimize or prevent cancer- or treatment-related effects from negatively affecting job performance. CONCLUSIONS: Knowledge about the broad range of both formal and informal strategies identified in this study may enable health care and social services providers, as well as cancer survivors and employers, to identify a wide range of specific strategies that may reduce the negative effects of work-related limitations in specific work settings. Insights gained from this analysis should inform future research on work and cancer survivorship.