Addressing transportation barriers in oncology: existing programs and new solutions.

Transportation is an underrecognized, but modifiable barrier to accessing cancer care, especially for clinical trials. Clinicians, insurers, and health systems can screen patients for transportation needs and link them to transportation. Direct transportation services (i.e., ride-sharing, insurance-provided transportation) have high rates of patient satisfaction and visit completion. Patient financial reimbursements provide necessary funds to counteract the effects of transportation barriers, which can lead to higher trial enrollment, especially for low socioeconomic status and racially and ethnically diverse patients. Expanding transportation interventions to more cancer patients, and addressing knowledge, service, and system gaps, can help more patients access needed cancer care.

Financial toxicity in gynecologic oncology: a multi-practice survey.

BACKGROUND: Financial toxicity is associated with worse cancer outcomes, including lower survival. OBJECTIVE: To characterize the prevalence of, and patient risk factors for, financial toxicity among gynecologic oncology patients in a multi-site health system. METHODS: We identified patients seen in University of Pennsylvania gynecologic oncology practices between January 2020 and February 2022 with a patient portal account. We sent a survey to all alive patients twice between March and April 2022, including the 11-item Comprehensive Score for Financial Toxicity (COST) tool. We compared differences between patients reporting high (COST score <26) and low financial toxicity (COST score ≥26) in Χ2 and regression analyses. RESULTS: Of 8239 patients, 6925 had a portal account, and 498 completed the survey for 7.2% response rate. 44% had a COST score <26, indicating financial toxicity. Patients with high financial toxicity were more likely to be younger (mean age 54 vs 60), have cervical cancer (10% vs 4%; p=0.008), be privately insured (71% vs 57%; p=0.003) or have Medicaid (7% vs 3%; p=0.03), or be unemployed (18% vs 3%; p=<0.001), and less likely to be white (79% vs 90%, p=0.003) than those with low financial toxicity. Patients with Medicare were less likely to experience financial toxicity than privately insured patients (RR=0.59, 95% CI 0.37 to 0.95). CONCLUSION: In this study of patients with gynecologic cancer or pre-cancer, 44% had financial toxicity. Financial toxicity was higher in patients who were younger, did not identify as White, and had private insurance. Targeted measures to address financial toxicity are needed to minimize disparities in patient burden of cancer treatment.

"I wish I knew about these programs before!" A brief report exploring barriers to financial assistance reported by gynecological oncology patients.

PURPOSE: Despite widespread reports of cancer-related financial hardship, hospital financial assistance programs are underutilized. APPROACH: Rapid qualitative research. SAMPLE: Gynecologic oncology patients with recurrent or metastatic disease, under 65 years old, and Comprehensive Score for Financial Toxicity of 26 or under. METHODS: Semi-structured interviews to elicit (1) financial assistance awareness/knowledge, (2) barriers to accessing assistance, and (3) suggestions for improving access. We analyzed the transcripts using thematic analysis: open coding, consensus building/codebook, and identification of salient themes. FINDINGS: We interviewed 25 patients and identified four barriers and three suggestions for improving access. Barriers: lack of awareness, perceptions of ineligibility, fear of negative consequences, and being overwhelmed. Suggestions: simplifying financial processes, providing individualized assistance, and being more proactive by intervening earlier. CONCLUSION: Increase access by reducing stigma, misconceptions, and more proactively engaging at-risk patients. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Patients may be too afraid or overwhelmed to ask for help. A more proactive, psychosocial approach is needed.

Cancer-related inflammation and depressive symptoms: Systematic review and meta-analysis.

BACKGROUND: Depressive symptoms in patients with cancer are associated with poor quality of life and decreased survival. Although inflammation is reliably associated with depression in otherwise healthy individuals, the association in patients with cancer remains unclear. Given the high prevalence of cancer-related inflammation, the authors aimed to establish the relationship between inflammation and depression in cancer patients based on extant literature. METHODS: A systematic review and meta-analysis was performed using Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidelines and registered under Prospero ID CRD42021226743. Three databases were searched including PubMed, the Cochrane Library, and PsycINFO using the following criteria for inclusion: 1) measurement of a peripheral inflammatory marker, 2) use of a validated tool/scale to measure depression, and 3) a cancer diagnosis. Risk of publication bias was assessed by Funnel plot and Egger test. RESULTS: Seventy-three studies were included in the systematic review and 54 studies (n = 5017) were included in meta-analyses. Associations with depressive symptoms were significant for peripheral blood interleukin (IL)-6 (standardized mean difference [SMD] = 0.59; 95% confidence interval [CI], 0.35-0.82), I2  = 57.9%; tumor necrosis factor (TNF) (SMD = 0.73; 95% CI, 0.35-1.11), I2  = 74.1%; and C-reactive protein (CRP) (SMD = 0.57; 95% CI, 0.27-0.87), I2  = 0%. IL-5, IL-13, albumin, and neutrophil-to-lymphocyte ratio were associated with depressive symptoms but based on fewer studies. Most cancer settings were represented; the number of studies per inflammatory marker varied from 1 to 52. CONCLUSIONS: Although peripheral inflammatory markers were unevenly studied, the most studied markers (IL-6, TNF, and CRP) were associated with depressive symptoms in cancer patients and may be useful for management of depressive symptoms in the cancer setting. LAY SUMMARY: Peripheral blood inflammatory markers (IL-6, TNF, and CRP) were associated with depressive symptoms in various cancer settings. Although further studies are warranted, these findings may help identify and manage depressive symptoms in patients with cancer.

Work Status Reduction and Cost-Related Nonadherence during Cancer Treatment.

Many cancer patients experience a reduction in work status during cancer treatment. Authors analyzed cross-sectional survey data from U.S. cancer patients and survivors to examine the relationship between reduced work status and cost-related nonadherence, defined as skipping or forgoing medical treatments or medications due to cost. Of 381 respondents who were working at the time of diagnosis, 143 reported a reduction in work status during treatment. Age, racial identity, level of education, and treatment type were associated with reductions in work status. Respondents who reduced work status had higher odds of engaging in cost-related nonadherence than those with stable employment. Authors conclude that reduced work status is associated with nonadherence that can undermine treatment benefit and lead to disease progression. This association is troubling given that African American respondents were more likely to report reduced work status during treatment, potentially exacerbating existing cancer health disparities. To reduce treatment nonadherence, social workers should assess for potential employment problems and be prepared to intervene through counseling, community resource referrals, and direct financial assistance. Social workers should be aware of how structural racism is reproduced through inequitable labor policies and practices that have direct implications for health and access to care.

Palliative care for case managers: Building capacity to extend community-based palliative care to underserved older adults.

Palliative care has demonstrated effectiveness in alleviating the biological, emotional, social, and spiritual symptoms that accompany serious illness, and improving quality of life for seriously ill individuals and their family members. Despite increasing availability, there are significant disparities in access to and utilization of palliative care, particularly among diverse, low-income, and community-dwelling older adults with chronic illness. Training frontline service providers is a novel approach to expanding access to palliative care among underserved elders. This article presents a process and outcome evaluation of a palliative care curriculum that was developed and piloted for geriatric case managers in a large urban area. We describe the background, planning, design, implementation, and preliminary outcomes associated with a pilot implementation of the curriculum. We conclude with implications for replicating efforts to enhance frontline providers' knowledge, skills, and self-efficacy in extending palliative care to communities that lack access to critical supports for their burdensome symptoms.

The financial coping strategies of US cancer patients and survivors.

PURPOSE: Coping behaviors may play a mediating role in producing the negative health outcomes observed in financially burdened cancer patients and survivors. METHODS: Exploratory factor and latent class analysis of survey data. RESULTS: A total of 510 people completed the survey, ages ranged from 25 to over 75 [over half greater than 55 years old (57.8%)]. Most respondents identified as female (64.7%), white (70.8%), or African American (18.6%). A four-factor model of financial coping was revealed: care-altering, lifestyle-altering, self-advocacy, and financial help-seeking. Respondents grouped into three financial coping classes: low burden/low coping (n = 212), high self-advocacy (n = 143), and high burden/high coping (n = 155). African American respondents were at far greater odds than white respondents of being in the high burden/high coping class (OR = 5.82, 95% CI 3.01-6.64) or the self-advocacy class (OR = 1.99, 95% CI 1.19-2.80) than the low burden/low coping class. Compared to respondents aged 65 years and older, those 35-44 were more likely in the high burden/high coping class (OR = 12.27, 95% CI 7.03-19.87) and the high self-advocacy class (OR = 7.08, 95% CI 5.89-8.28) than the low burden/low coping class. CONCLUSION: One-third of respondents were in the high burden/high coping class. Age and race/ethnicity were significantly associated with class membership. Some coping strategies may compromise health and well-being. Program and policy interventions that reduce the odds that patients will use strategies that undermine treatment outcomes and increase patient use of protective strategies are needed.

Exploring the role of psychosocial care in value-based oncology: Results from a survey of 3000 cancer patients and survivors.

PURPOSE: To explore the psychosocial needs of cancer patients and survivors across the United States and their implications for value-based oncology. DESIGN: A secondary analysis of findings from a cross-sectional national online survey. SAMPLE: Respondents were sampled and stratified by cancer type and geographic region to approximate the cancer-affected population of the United States. Breast, prostate, and colorectal were the most common cancers reported. Across surveys, the majority of respondents were female (57%), over 55 (60%), and white (70%) and had at least some college (36%). METHODS: Six online surveys were administered to cohorts of approximately 500 unique cancer patients and survivors. Survey topics included: (1) diagnosis, (2) treatment planning, (3) communication with providers, (4) insurance and financial concerns, (5) quality of life, side effects, and symptoms, and (6) survivorship and end-of-life. Descriptive analyses were used to explore psychosocial needs and experiences across three domains of patient-centered value in oncology. FINDINGS: Each survey received 500-527 responses. Respondents most commonly reported needing more information regarding their insurance coverage and out-of-pocket costs (65%), access to clinical trials (89%), and support organizations (45%). Forty-one percent were very or extremely distressed about cancer's impact on their ability to work and over 25% reported high-levels of cancer-related financial hardship. CONCLUSIONS: Patients and survivors reported significant unmet informational needs, financial hardship, distress, and symptoms or treatment side effects that interfered with daily life. Implications for Psychosocial Providers or Policy: Providers and payment reform advocates can improve value in oncology by ensuring access to comprehensive psychosocial care and informational support.

Do Providers Know What They Do Not Know? A Correlational Study of Knowledge Acquisition and Person-Centered Care.

Person-centered care (PCC) is a central feature of health care reform, yet the tools needed to deliver this practice have not been implemented consistently. Person-centered care planning (PCCP) is a treatment planning approach operationalizing the values of recovery. To better understand PCCP implementation, this study examined the relationship between recovery knowledge and self-reported PCCP behaviors among 224 community mental health center staff. Results indicated that increased knowledge decreased the likelihood of endorsing non-recovery implementation barriers and self-reporting a high level of PCCP implementation. Findings suggest that individuals have difficulty assessing their performance, and point to the importance of objective fidelity measures.

Mentoring the Next Generation of Social Workers in Palliative and End-of-Life Care: The Zelda Foster Studies Program.

As Americans live longer with chronic illnesses, there is a growing need for social workers with the knowledge and skills to deliver quality palliative care to older adults and their families. Nevertheless, there remains a critical shortage of social workers prepared to provide quality palliative and end-of-life care (PELC) and to maintain the field into the next generation. Formal mentorship programs represent an innovative approach to enhancing practice, providing support and guidance, and promoting social work leadership in the field. This article reviews the literature on mentorship as an approach to professional and leadership development for emerging social workers in PELC. The Zelda Foster Studies Program in Palliative and End-of-Life Care bolsters competencies and mentors social workers in PELC over the trajectory of their careers, and enhances the capacity in the field. Findings from the first six years of two components of the ZF Program are examined to illustrate the feasibility, benefits, and challenges of formal mentorship programs. The authors describe the background, structure, and evaluation of the initiative's mentorship programs, and discuss the implications of mentorship in PELC for social work education, practice, and research.

Administrative Burden Associated with Cost-Related Delays in Care in U.S. Cancer Patients.

BACKGROUND: U.S. cancer patients engage in administrative tasks to pay for their healthcare. This study investigated the relationship between payment tasks and timely access to cancer care. METHODS: We analyzed online survey data from 510 U.S. cancer patients and survivors to understand the relationship between administrative payment tasks and cost-related delays and nonadherence. Two-part modelling was used to determine if, and to what extent, there was a relationship between administrative burden and cost-related delays/nonadherence. RESULTS: Younger patients (≤44 years) reported more payment tasks and cost-related delays/nonadherence than older patients (≥ 55 years); African American patients reported more payment tasks and cost-related delays/nonadherence than white patients. After accounting for age, race/ethnicity, education, and out-of-pocket costs, patients who reported engaging in more tasks had greater log odds of delaying/forgoing care [b = 0.18; 95% confidence interval (CI), 0.12-0.24]. Cost-related delays/nonadherence increased by 32% for every unit increase in administrative payment burden (b = 0.32; 95% CI, 0.18-0.46). CONCLUSIONS: Administrative payment burden increased the odds of cost-related delays and nonadherence by 49%, taking the form of delayed or skipped doctor appointments, tests and bloodwork, and prescription fulfillment. Younger patients and those identifying as African American were more likely to engage in payment tasks and to delay or forgo care due to cost. Administrative burdens can disrupt access to care and traditionally underserved patient populations are disproportionately exposed to these hardships. IMPACT: Reducing the complexity of healthcare through universal, human-centered design could reduce burdens and increase access.

Building Organizational Capacity to Deliver Oncology Financial Advocacy.

Background: Cancer-related financial hardship is linked to poor health outcomes and early mortality. Oncology financial advocacy (OFA) aims to prevent cancer-related financial hardship in oncology settings by assessing patients' needs and connecting them to available financial resources. Despite promising evidence, OFA remains underutilized. Objectives: Describe oncology financial advocates' perceptions about the challenges to and opportunities for implementing oncology financial advocacy (OFA) in community cancer centers. Methods: Nine virtual focus groups were conducted with 45 oncology financial advocates. Focus group transcripts were analyzed using template-based thematic analysis informed by the Consolidated Framework for Implementation Research (CFIR); two study team members coded each transcript and all six team members identified emergent themes. Results: Salient themes were identified across all five domains of the CFIR framework: (1) intervention characteristics: participants described challenges of adapting OFA to meet the needs of the medical system instead of needs of the patients; (2) outer setting: growing awareness of health and cancer disparities could bring more attention to and investment in OFA; (3) inner setting: programs are under-resourced to assist all at-risk patients, staffing, technology integration, and network/communication workflows are needed; (4) characteristics of individuals: advocates believe strongly in the effectiveness and would like to see their credibility enhanced with professional certification; (5) process: implementation strategies that target the engagement of leadership, key stakeholders, and patients to increase program reach are needed. Conclusions: OFA cannot reach all at-risk patients because of understaffing, poor communication between departments, and a lack of understanding OFA as an intervention among colleagues, key stakeholders, and patients. To reach full implementation, advocates need assistance in making the case for more resources, research on patient outcomes, professional certification, and the use of policy to incentivize financial advocacy as a standard of care in medicine.

Guaranteed Income and Financial Treatment Trial (GIFT Trial or GIFTT): a 12-month, randomized controlled trial to compare the effectiveness of monthly unconditional cash transfers to treatment as usual in reducing financial toxicity in people with cancer who have low incomes.

Cancer-related financial hardship (i.e., financial toxicity) has been associated with anxiety and depression, greater pain and symptom burden, treatment nonadherence, and mortality. Out-of-pocket healthcare costs and lost income are primary drivers of financial toxicity, however, income loss is a pronounced risk factor for cancer patients with low incomes. There has been little progress in developing an income intervention to alleviate financial toxicity cancer patients with low incomes. Unconditional cash transfers (UCT), or guaranteed income, have produced positive health effects in experiments with general low-income populations, but have not yet been evaluated in people with cancer. The Guaranteed Income and Financial Treatment (GIFT) Trial will use a two-arm randomized controlled trial to compare the efficacy of a 12-month UCT intervention providing $1000/month to treatment as usual on financial toxicity, health-related quality of life and treatment adherence in people with cancer who have low-incomes. The study will recruit 250 Medicaid beneficiaries with advanced cancer from two comprehensive cancer centers in Philadelphia, obtain informed consent, and randomize patients to one of two conditions: (1) $1,000/month UCT or (2) treatment as usual. Both arms will receive information on financial toxicity and the contact information for their hospital social worker or financial advocate upon enrollment. Participants will complete online surveys at baseline, 3, 6, 9, and 12 months from enrollment to collect patient-reported data on primary (i.e., financial toxicity, health-related quality of life, and treatment adherence) and secondary outcomes (i.e., anxiety, depression, food insecurity, housing stability). Social security records will be used to explore the effect on mortality at 2, 3, and 5 years post-enrollment. Linear mixed-models will be used to analyze all primary and secondary continuous outcomes over time and general estimating equations with a logit link and binary distribution for all binary outcomes over time. Differences between treatment and control groups and treatment effects will be determined using models that control for age, gender, race, baseline food security, baseline housing stability, and baseline ECOG. Findings from this study will have significant implications for the development and implementation of programs and policies that address the financial burden of cancer and other serious illnesses.

Corrigendum: Guaranteed Income and Financial Treatment (G.I.F.T.): a 12-month, randomized controlled trial to compare the effectiveness of monthly unconditional cash transfers to treatment as usual in reducing financial toxicity in people with cancer who have low incomes.

[This corrects the article DOI: 10.3389/fpsyg.2023.1179320.].

Corrigendum: Guaranteed Income and Financial Treatment Trial (GIFT Trial or GIFTT): a 12-month, randomized controlled trial to compare the effectiveness of monthly unconditional cash transfers to treatment as usual in reducing financial toxicity in people with cancer who have low incomes.

[This corrects the article DOI: 10.3389/fpsyg.2023.1179320.].

Interventions to Improve Prognostic Understanding in Advanced Stages of Life-Limiting Illness: A Systematic Review.

CONTEXT: Among patients with advanced life-limiting illness, an inaccurate understanding of prognosis is common and associated with negative outcomes. Recent years have seen an emergence of new interventions tested for their potential to improve prognostic understanding. However, this literature has yet to be synthesized. OBJECTIVES: To identify and characterize tested interventions, summarize intervention findings, and outline directions for future research. METHODS: Systematic searches were conducted in five databases - PubMed/MEDLINE (NLM), EMBASE (Elsevier), CINAHL (EBSCO), PsycINFO (OVID), and Cochrane Central Register of Controlled Trials (Wiley) - to identify interventions evaluated within a randomized controlled design for their impact on prognostic understanding. RESULTS: Of the 2354 initial articles, 12 were selected for final inclusion, representing nine unique interventions. Intervention types included decision aids accompanying medical consults, palliative care consultations, communication training for patients and physicians, and targeted discussions regarding prognosis and treatment decision making. Common components of interventions included provision of prognostic information, assistance with end-of-life care planning, and provision of decisional and emotional support during discussions. Most interventions were associated with some indication of improvement in prognostic understanding. However, even after intervention, inaccurate prognostic understanding was common, with 31-95 percent of patients in intervention groups exhibiting inaccurate perceptions of their prognosis. CONCLUSION: Prognostic understanding interventions hold the potential to improve patient understanding and thus informed decision making, but limitations exist. Future research should examine why many patients receiving intervention may continue to maintain inaccurate perceptions, and identify which intervention components can best enhance informed, value-consistent decision making.

Evidence of the Feasibility and Preliminary Efficacy of Oncology Financial Navigation: A Scoping Review.

One in three cancer patients reports financial hardship. Cancer-related financial hardship is associated with diminished quality of life, treatment nonadherence, and early mortality. Over 80% of NCI-designated cancer centers provide some form of oncology financial navigation (OFN). Although interest in OFN has grown, there is little scientific evidence to guide care delivery. We conducted a scoping review to assess the evidence of OFN's feasibility and preliminary efficacy and determine its core components/functions. Papers were included that (i) evaluated a clinical intervention to reduce financial hardship in patients with cancer or caregivers by facilitating access to resources, (ii) were conducted in the United States, and (iii) were published since 2000. Of 681 titles, 66 met criteria for full-text review, and six met full inclusion/exclusion criteria. The FN literature consists of descriptive studies and pilot trials focused on feasibility, acceptability, and preliminary efficacy. The studies showed that OFN implementation and evaluation are feasible; however, efficacy was difficult to evaluate because the studies were limited by small sample sizes (attributed to low patient participation). Most studies were conducted in urban, academic medical centers-which are less likely to be used by the poor and patients of color, who have the highest risk of financial hardship. The studies did not attempt to address the issue of underlying poverty at the individual and community level and whether OFN could be effectively adapted for these care environments. Future OFN programs must be tested with underserved and racially diverse patient populations, and evaluation efforts should aim to understand patient-reported barriers to participation.

Correction to: Transitioning to Person-Centered Care: a Qualitative Study of Provider Perspectives.

The original article misspelled the name of Lauren Jessell. The original article has been corrected.