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Aims: To describe nursing practices for financial toxicity management based on nurses' perceptions. Materials & methods: A survey was conducted with 615 oncology nurses in Japan, focusing on nurses' perspectives on the importance of financial toxicity, nursing practices to manage financial toxicity and factors inhibiting its management. Results: A total of 521 participated, of whom 266 respondents (51.1%) considered nurses' role important, and they engaged in a significantly higher proportion of nursing practices. Participants with greater perceptions of their role included certified or specialized nurses and nurses responsible for outpatient care. Conclusion: Interventions leveraging the expertise of certified or specialized nurses and nurses involved in outpatient care could help to spread proactive nurse practices addressing financial toxicity.
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Assistência Ambulatorial , Estresse Financeiro , Humanos , Certificação , Japão , Seguro SaúdeRESUMO
PURPOSE: This article provided a comprehensive scoping review, synthesizing existing literature on the financial distress faced by breast cancer patients. It examined the factors contributing to financial distress, the impact on patients, coping mechanisms employed, and potential alleviation methods. The goal was to organize existing evidence and highlight possible directions for future research. METHODS: We followed the scoping review framework proposed by the Joanna Briggs Institute (JBI) to synthesize and report evidence. We searched electronic databases, including PubMed, Web of Science, Embase, and Cochrane Library, for relevant literature. We included English articles that met the following criteria: (a) the research topic was financial distress or financial toxicity, (b) the research subjects were adult breast cancer patients, and (c) the article type was quantitative, qualitative, or mixed-methods research. We then extracted and integrated relevant information for reporting. RESULTS: After removing duplicates, 5459 articles were retrieved, and 43 articles were included based on the inclusion and exclusion criteria. The articles addressed four main themes related to financial distress: factors associated with financial distress, impact on breast cancer patients, coping mechanisms, and potential methods for alleviation. The impact of financial distress on patients was observed in six dimensions: financial expenses, financial resources, social-psychological reactions, support seeking, coping care, and coping lifestyle. While some studies reported potential methods for alleviation, few discussed the feasibility of these solutions. CONCLUSIONS: Breast cancer patients experience significant financial distress with multidimensional impacts. Comprehensive consideration of possible confounding factors is essential when measuring financial distress. Future research should focus on exploring and validating methods to alleviate or resolve this issue.
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Adaptação Psicológica , Neoplasias da Mama , Estresse Financeiro , Humanos , Neoplasias da Mama/psicologia , Neoplasias da Mama/economia , Estresse Financeiro/psicologia , Feminino , Efeitos Psicossociais da DoençaRESUMO
Due to processes of financialisation, financial parties increasingly penetrate the healthcare domain and determine under which conditions care is delivered. Their influence becomes especially visible when healthcare organisations face financial distress. By zooming-in on two of such cases, we come to know more about the considerations, motives and actions of financial parties in healthcare. In this research, we were able to examine the social dynamics between healthcare executives, banks and health insurers involved in a Dutch hospital and mental healthcare organisation on the verge of bankruptcy. Informed by interviews, document analysis and translation theory, we reconstructed the motives and strategies of executives, banks and health insurers and show how they play a crucial role in decision-making processes surrounding the survival or downfall of healthcare organisations. While parties are bound by legislation and company procedures, the outcome of financial distress can still be influenced. Much depends on how executives are perceived by financial stakeholders and how they deal with threats of destabilisation of the network. We further draw attention to the consequences of financialisation processes on the practices of healthcare organisations in financial distress.
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Estresse Financeiro , Humanos , Países Baixos , Estresse Financeiro/psicologia , Falência da Empresa , Seguro Saúde/economia , Seguradoras/economia , Atenção à Saúde/economia , Entrevistas como Assunto , Tomada de DecisõesRESUMO
We examined whether shared leisure offers protection against negative associations between financial distress and relationship quality (satisfaction and commitment) for lower- and higher-income couples. We expected husbands' and wives' reports of shared leisure would be protective of the effects of financial distress (Time 2) on relationship satisfaction (Time 3) and commitment (Time 4) for higher-income couples (but not lower-income couples). Participants were drawn from a nationally representative, longitudinal study of US newly married couples. The analytic sample included both members of 1382 different-gender couples with data across the three sampled waves of data collection. Shared leisure was largely protective of the effects of financial distress on husbands' commitment for higher-income couples. For lower-income couples, higher shared leisure exacerbated this effect. These effects were only found at extreme levels of household income and shared leisure. When considering if couples who play together stay together, our findings suggest that it can, but it is critical to understand the financial situation of the couple and the resources they may have to support shared leisure activities. Professionals working with couples should consider their financial situation when making recommendation to engage in shared leisure, such as going out for recreation.
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Casamento , Cônjuges , Humanos , Estudos Longitudinais , Renda , Satisfação PessoalRESUMO
BACKGROUND & AIMS: Liver disease is associated with substantial morbidity and mortality, likely incurring financial distress (i.e. healthcare affordability and accessibility issues), although long-term national-level data are limited. METHODS: Using the National Health Interview Survey from 2004 to 2018, we categorised adults based on report of liver disease and other chronic conditions linked to mortality data from the National Death Index. We estimated age-adjusted proportions of adults reporting healthcare affordability and accessibility issues. Multivariable logistic regression and Cox regression were used to assess the association of liver disease with financial distress and financial distress with all-cause mortality, respectively. RESULTS: Among adults with liver disease (n = 19,407) vs. those without liver disease (n = 996,352), those with cancer history (n = 37,225), those with emphysema (n = 7,937), and those with coronary artery disease (n = 21,510), the age-adjusted proportion reporting healthcare affordability issues for medical services was 29.9% (95% CI 29.7-30.1%) vs. 18.1% (95% CI 18.0-18.3%), 26.5% (95% CI 26.3-26.7%), 42.2% (95% CI 42.1-42.4%), and 31.6% (31.5-31.8%), respectively, and for medications: 15.5% (95% CI 15.4-15.6%) vs. 8.2% (95% CI 8.1-8.3%), 14.8% (95% CI 14.7-14.9%), 26.1% (95% CI 26.0-26.2%), and 20.6% (95% CI 20.5-20.7%), respectively. In multivariable analysis, liver disease (vs. without liver disease, vs. cancer history, vs. emphysema, and vs. coronary artery disease) was associated with inability to afford medical services (adjusted odds ratio [aOR] 1.84, 95% CI 1.77-1.92; aOR 1.32, 95% CI 1.25-1.40; aOR 0.91, 95% CI 0.84-0.98; and aOR 1.11, 95% CI 1.04-1.19, respectively) and medications (aOR 1.92, 95% CI 1.82-2.03; aOR 1.24, 95% CI 1.14-1.33; aOR 0.81, 95% CI 0.74-0.90; and aOR 0.94, 95% CI 0.86-1.02, respectively), delays in medical care (aOR 1.77, 95% CI 1.69-1.87; aOR 1.14, 95% CI 1.06-1.22; aOR 0.88, 95% CI 0.79-0.97; and aOR 1.05, 95% CI 0.97-1.14, respectively), and not receiving the needed medical care (aOR 1.86, 95% CI 1.76-1.96; aOR 1.16, 95% CI 1.07-1.26; aOR 0.89, 95% CI 0.80-0.99; aOR 1.06, 95% CI 0.96-1.16, respectively). In multivariable analysis, among adults with liver disease, financial distress (vs. without financial distress) was associated with increased all-cause mortality (aHR 1.24, 95% CI 1.01-1.53). CONCLUSIONS: Adults with liver disease face greater financial distress than adults without liver disease and adults with cancer history. Financial distress is associated with increased risk of all-cause mortality among adults with liver disease. Interventions to improve healthcare affordability should be prioritised in this population. IMPACT AND IMPLICATIONS: Adults with liver disease use many medical services, but long-term national studies regarding the financial repercussions and the effects on mortality for such patients are lacking. This study shows that adults with liver disease are more likely to face issues affording medical services and prescription medication, experience delays in medical care, and needing but not obtaining medical care owing to cost, compared with adults without liver disease, adults with cancer history, are equally likely as adults with coronary artery disease, and less likely than adults with emphysema-patients with liver disease who face these issues are at increased risk of death. This study provides the impetus for medical providers and policymakers to prioritise interventions to improve healthcare affordability for adults with liver disease.
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Doença da Artéria Coronariana , Doenças do Sistema Digestório , Hepatopatias , Neoplasias , Adulto , Humanos , Estados Unidos/epidemiologia , Custos e Análise de Custo , Acessibilidade aos Serviços de SaúdeRESUMO
BACKGROUND: Precise prognostication is the key to optimum and effective treatment planning for early-stage hormone receptor (HR) positive, HER2/neu negative breast cancer patients. Differences in the breast cancer incidence and tumor anatomical features at diagnosis, pharmacogenomics data between Western and Indian women along with the vast diversity in the economic status and differences in insurance policies of these regions; suggest recommendations put forward for Western women might not be applicable to Indian/Asian women. Opinions from oncologists through a voting survey on various prognostic factors/tools to be considered for planning adjuvant therapy are consolidated in this report for the benefit of oncologists of the sub-continent, SAARC and Asia's LMIC (low and middle-income countries). METHODS: A three-phase DELPHI survey was conducted to collect opinions on prognostic factors considered for planning adjuvant therapy in early-stage HR+/HER2/neu negative breast cancer patients. A panel of 25 oncologists with expertise in breast cancer participated in the survey conducted in 2021. The experts provided opinions as 'agree' or disagree' or 'not sure' in phases-1 and 2 which were conducted virtually; in the final phase-3, all the panel experts met in person and concluded the survey. RESULTS: Opinions on 41 statements related to prognostic factors/tools and their implications in planning adjuvant endocrine/chemotherapy were collected. All the statements were supported by the latest data from the clinical trials (prospective/retrospective). The statements with opinions of consensus less than 66% were disseminated in phase-2, and later in phase-3 with supporting literature. In phase-3, all the opinions from panelists were consolidated and guidelines were framed. CONCLUSIONS: This consensus guideline will assist oncologists of India, SAARC and LMIC countries in informed clinical decision-making on adjuvant treatment in early HR+/HER2/neu negative breast cancer patients.
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Neoplasias da Mama , Neoplasias de Mama Triplo Negativas , Humanos , Feminino , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/genética , Neoplasias da Mama/terapia , Estudos Prospectivos , Países em Desenvolvimento , Estudos Retrospectivos , Inquéritos e Questionários , Receptor ErbB-2/genética , Receptor ErbB-2/uso terapêuticoRESUMO
BACKGROUND: Socioeconomic status (SES) is a critical multifactorial determinant of health and plays a significant role in shaping an individual's health outcomes. While a composite scale has been proposed to measure SES in children, to our knowledge, limited composite scales were developed for adults in different contexts, highlighting the need for a comprehensive and valid SES measure to elucidate the relationship between SES and health in this population. OBJECTIVE: This study aimed to develop and validate a composite scale that measures the socioeconomic status in Lebanon and assess its correlates in a socioeconomic crisis context. METHODS: An online study was carried out between October and November 2022 across all Lebanese regions. Snowball sampling was used to enroll 448 adults living in Lebanon through a questionnaire created on Google Forms and shared by WhatsApp to a first sample from all geographic areas. RESULTS: The developed composite scale (SES-C) was found to be reliable and valid. It was based on several aspects of socioeconomic status, i.e., participant education level, family head education level, perceived social class, not being in debt, not receiving financial help, crowding index, participant work status, family head work status, monthly household income, and financial well-being. Furthermore, high SES was significantly associated with married status, older age, alcohol consumption, the absence of chronic disease, easy access to healthcare, private insurance coverage, and the number of rooms in the house in the bivariate analysis. In the multivariable analysis, high SES was significantly associated with age (ORa-1.13; p = 0.011) and easy access to healthcare (ORa = 7.81; p = 0.001) and inversely associated with chronic disease (ORa = 0.17; p = 0.002). Similar results with lower magnitude were found for moderate SES. CONCLUSION: The study successfully developed and validated a composite scale (SES-C) for measuring the socioeconomic status in Lebanon, taking into account the complexities of the Lebanese context. The scale was found to be reliable and valid, and its results showed significant correlations with various factors such as older age, lower risk of chronic disease, and easy access to healthcare.
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Consumo de Bebidas Alcoólicas , Instalações de Saúde , Adulto , Criança , Humanos , Correlação de Dados , Escolaridade , Classe SocialRESUMO
The aim of this study was to investigate the psychometric properties of the Greek version of FACIT-COST, as well as to assess the levels of financial distress of patients suffering from lung cancer in relation to their quality of life and lung cancer symptom burden. This was a cross-sectional quantitative study. A self-assessment instrument was used to gather the data. The study involved 120 lung cancer patients who were treated using chemotherapy in a day clinic of a General Hospital in Athens. Data were collected with the COST-FACIT-v2 (used to assess the patients' financial toxicity), The 12-item Health Survey (SF-12), and functional Assessment of Cancer Therapy-Lung Symptom Index Questionnaire-7 items-version 4 (FACIT-FACT-LCS). Descriptive statistics as well as exploratory factor analysis performed all the statistical analyses, which were conducted using IBM SPSS Statistics 25 and had p-values with a significance level of 0.05. The majority of the participants were male (68.3%), married or cohabitated (81.3%), and had been diagnosed with microcell cancer (90%). The factor analysis resulted in one factor that interpreted 35% of the total variance. FACT-L (r = 0.365, p < 0.001), physical component SF-12 (r = 0.184, p = 0.045), and mental health component SF-12 (r = 0.268, p = 0.003) were positively correlated to FACIT-OST, as expected. The Greek validated COST-FACIT-v2 is a reliable tool in providing rapid assessment of cancer patients' level of financial distress.
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Neoplasias Pulmonares , Qualidade de Vida , Humanos , Masculino , Feminino , Qualidade de Vida/psicologia , Estudos Transversais , Estresse Financeiro , Idioma , Inquéritos e Questionários , Neoplasias Pulmonares/diagnóstico , Neoplasias Pulmonares/tratamento farmacológico , Psicometria , Reprodutibilidade dos TestesRESUMO
While health care-associated financial burdens among uninsured individuals are well described, few studies have systematically characterized the array of financial and logistical complications faced by insured individuals with low household incomes. In this mixed methods paper, we conducted 6 focus groups with a total of 55 residents and analyzed programmatic administrative records to characterize the specific financial and logistic barriers faced by residents living in public housing in East and Central Harlem, New York City (NYC). Participants included individuals who enrolled in a municipal community health worker (CHW) program designed to close equity gaps in health and social outcomes. Dedicated health advocates (HAs) were explicitly paired with CHWs to provide health insurance and health care navigational assistance. We describe the needs of 150 residents with reported financial barriers to care, as well as the navigational and advocacy strategies taken by HAs to address them. Finally, we outline state-level policy recommendations to help ameliorate the problems experienced by participants. The model of paired CHW-HAs may be helpful in addressing financial barriers for insured populations with low household income and reducing health disparities in other communities.
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Atenção à Saúde , Pobreza , Humanos , Cidade de Nova Iorque , Grupos FocaisRESUMO
This paper assesses corporate financial distress in terms of liquidity and risk of insolvency due to the COVID-19 pandemic. We develop a novel multivariate approach to obtain monthly data on industry turnover, exploiting real time data to capture the atypical character of industry-specific disturbances. By combining the estimated set of industry revenue shocks with pre-pandemic financial statements, we quantify the impact of the pandemic on the risk of insolvency in the EU non-financial corporate sector. Our definition of risk of insolvency takes into account not only the equity position of firms, but also risks relating to overindebtedness. The analysis controls for firms that were financially vulnerable already before the pandemic, thus being prone to become at risk of insolvency also in absence of the COVID-19 turmoil. We find that, for the EU as a whole, 25% of firms exhausted their liquidity buffers by the end of 2021 (a practical cut-off date of the analysis, not an assumed end of the pandemic). Furthermore, 10% of firms which were viable before the pandemic, appear to have shifted into risk of insolvency as a result of the COVID-19 crisis. The magnification of financial vulnerability in the hardest-hit industries mainly occurs among firms with no legacy issues, i.e. firms with positive profitability pre-pandemic. A similar finding is reported for some of the hardest-hit countries, such as Italy and Spain. In other countries, such as Germany or Greece, the magnification of financial vulnerability mainly occurs among firms with negative profitability pre-pandemic.
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The COVID-19 pandemic crisis and the associated lockdown measures have exerted significantly adverse effects on corporate sectors globally. Archanskaia et al. (2023) provide a novel empirical strategy to timely assess corporate financial distress in the EU. The contribution is two-fold. First, this paper's notion of financial distress considers both the equity position and corporate indebtedness. Second, the methodology proposed in this paper allows the authors to estimate corporate financial distress in the EU at a highly granular level and link micro-level simulations to sectoral macroeconomic outcomes. The methodology employed by Archanskaia et al. (2023) consists of three steps. First, the authors apply a nowcasting model to acquire monthly industrial turnover data. Second, they feed the obtained monthly industrial turnover into a profit-generating process via an accounting identity to estimate monthly firm profits at the firm level. Third, the authors use the estimated firm profits with a snapshot of information on pre-existing liquid assets to deduce the firm-level liquidity needs and the depletion of equity through the focus period during COVID-19. These estimated results on firm equity position and indebtedness enable the authors to quantity corporate financial distress in the EU via various angles (e.g., country-level heterogeneity, industry heterogeneity, and the targeting of COVID support policies). The primary advantage of this approach is that it deals with large datasets at the granular level and produces firm-level results almost in real-time. Therefore, it can help policymaking track the effects of crises over time. However, one can quickly critique this three-step approach for its susceptibility to the usual Lucas critique. That said, since the objective here is to estimate firm-level financial distress, a large structural model being more or less aggregate in nature, though able to mitigate the Lucas critique concern, will encounter significant challenges in estimating firm-level results with the requisite level of granularity offered by the available data. Therefore, I broadly concur with the authors' position that 'the specific contribution of this paper consists in striking a better balance between the need to carry out a multi-country evaluation of the pandemic's effects on industrial activity in a strongly integrated region like the EU and the difficulty of capturing time, industry, and country variation in turnover with sufficient granularity.'
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This study analyses the decision criteria for a specific form of reorganisation in a creditor-friendly bankruptcy system such as that of Austria. From a neoinstitutional perspective, we present different forms of bankruptcy law and the specifics of reorganisation in Austria. Next, we show several distinctive criteria and influencing factors for formal reorganisation and workouts. We group these factors into constitutions and institutional settings, process and handling, and implementation of the reorganisation. Using a sample of 411 survey responses from turnaround professionals, our empirical study analyses the decision criteria for a specific form of reorganisation. We apply a multivariate approach comprising two-sided paired samples Wilcoxon tests to assess the derived hypotheses and a hierarchical cluster analysis. Our results indicate significant differences in the valuation of the two forms: the turnaround professionals rate public perception much higher for out-of-court reorganisation, whereas legal certainty is rated significantly better for formal proceedings. Regarding process and handling, transparency and the handling of blocking positions are arguments for formal reorganisation, whereas flexibility is valuated better for workouts. In terms of implementation, respondents see advantages for out-of-court reorganisation, as it facilitates the implementation of both financial and operational measures. Taxation, the handling of blocking positions, and the improvement of public perception were identified as key development aspects for the legal framework conditions of the various reorganisation forms.
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PURPOSE: Financial toxicity arises in cancer patients from subjective financial distress due to objective financial burden from the disease or treatment. Financial toxicity associates with worse outcomes. It has not been described in cancer patients undergoing radiotherapy in Germany and its publicly funded health system. In this context, we therefore investigated the prevalence of financial toxicity, associated risk factors, and patient preferences on communication of financial burden. METHODS: We conducted a preregistered ( https://doi.org/10.17605/OSF.IO/KH6VX ) cross-sectional study surveying patients at the end of their course of radiotherapy in two institutions. Objective financial burden was assessed by direct costs and loss of income. Financial toxicity was measured by subjective financial distress per EORTC QLQ-C30. We used Spearman's correlation and Fisher's exact test for univariate analysis, an ordinal regression for multivariate analysis. A p-value <â¯0.05 was considered statistically significant. RESULTS: Of the 100 patients participating in the study, 68% reported direct costs, 25% loss of income, and 31% subjective financial distress. Per univariate analysis, higher subjective financial distress was significantly associated with active employment, lower quality of life, lower household income, higher direct costs, and higher loss of income. The latter three factors remained statistically significant in the multivariate analysis. A relative majority of the patients welcomed communication regarding financial burden with their radiation oncologist. CONCLUSION: Financial toxicity is prevalent in cancer patients treated with radiotherapy in Germany. The reported risk factors may help to identify patients at risk. Future studies should validate these results and investigate interventions for financial toxicity to potentially improve outcomes.
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Estresse Financeiro , Neoplasias , Humanos , Estudos Transversais , Qualidade de Vida , Neoplasias/epidemiologia , Alemanha/epidemiologiaRESUMO
BACKGROUND: Serious illness often causes financial hardship for patients and families. Home-based palliative care (HBPC) may partly address this. OBJECTIVE: Describe the prevalence and characteristics of patients and family caregivers with high financial distress at HBPC admission and examine the relationship between financial distress and patient and caregiver outcomes. DESIGN, SETTINGS, AND PARTICIPANTS: Data for this cohort study were drawn from a pragmatic comparative-effectiveness trial testing two models of HBPC in Kaiser Permanente. We included 779 patients and 438 caregivers from January 2019 to January 2020. MEASUREMENTS: Financial distress at admission to HBPC was measured using a global question (0-10-point scale: none=0; mild=1-5; moderate/severe=6+). Patient- (Edmonton Symptom Assessment Scale, distress thermometer, PROMIS-10) and caregiver (Preparedness for Caregiving, Zarit-12 Burden, PROMIS-10)-reported outcomes were measured at baseline and 1 month. Hospital utilization was captured using electronic medical records and claims. Mixed-effects adjusted models assessed survey measures and a proportional hazard competing risk model assessed hospital utilization. RESULTS: Half of the patients reported some level of financial distress with younger patients more likely to have moderate/severe financial distress. Patients with moderate/severe financial distress at HBPC admission reported worse symptoms, general distress, and quality of life (QoL), and caregivers reported worse preparedness, burden, and QoL (all, p<.001). Compared to patients with no financial distress, moderate/severe financial distress patients had more social work contacts, improved symptom burden at 1 month (ESAS total score: -4.39; 95% CI: -7.61, -1.17; p<.01), and no increase in hospital-based utilization (adjusted hazard ratio: 1.11; 95% CI: 0.87-1.40; p=.41); their caregivers had improved PROMIS-10 mental scores (+2.68; 95% CI: 0.20, 5.16; p=.03). No other group differences were evident in the caregiver preparedness, burden, and physical QoL change scores. CONCLUSION: These findings highlight the importance and need for routine assessments of financial distress and for provision of social supports required to help families receiving palliative care services.
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Cuidadores , Cuidados Paliativos , Estudos de Coortes , Humanos , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one's education and establishing independence. The purpose of this study was to develop a conceptual model of financial burden among AYA cancer patients to inform development of a financial burden measure. METHODS: In-depth concept elicitation interviews were conducted with a purposive-selected stakeholder sample (36 AYAs and 36 AYA oncology health care providers). The constant comparative method was used to identify themes that illustrate AYAs' experience of financial burden by stakeholder groups. RESULTS: Eleven financial burden themes emerged: (1) impact of socioeconomic status and age; (2) significant cancer costs; (3) indirect cost "ripple effects"; (4) limited awareness of costs (adolescents); (5) emotional impact; (6) feeling overwhelmed navigating the health care system; (7) treatment decision modifications; (8) reducing spending; (9) coping strategies; (10) financial support; and (11) long-lasting impact. The conceptual model highlights the importance of material, psychosocial, and behavioral domains of financial burden with an emphasis on phase along the cancer continuum and developmental stage in the experience of financial burden for AYAs. CONCLUSIONS: Issues presented in the voice of AYA patients and providers highlight the profound impact of financial burden in this survivor group. The next step in this work will be to develop and test a patient-reported measure of financial burden among AYA cancer survivors.
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Sobreviventes de Câncer , Neoplasias , Adaptação Psicológica , Adolescente , Sobreviventes de Câncer/psicologia , Estresse Financeiro , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Sobreviventes , Adulto JovemRESUMO
OBJECTIVE: Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer-related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care. METHODS: Qualitative concept elicitation interviews were conducted with 24 caregivers of AYA cancer survivors (caregivers of adolescents, n = 12; caregivers of emerging adults, n = 12) recruited from four sites. Constant comparative methods were used to identify themes, and results were interpreted and organized into domains of the conceptual model. We also explored COVID-19 related financial impacts among a subset (n = 12) of caregivers. RESULTS: Seven themes emerged, which varied by age group and strengthened the conceptualization of the model. Themes centered on: (1) direct and indirect costs of cancer; (2) impact of socioeconomic status on financial burden; (3) caregiver desire to shield AYAs from distress due to financial burden; (4) strategies to manage cancer-related costs; (5) worries about AYAs' financial future; (6) seeking and receiving financial support; and (7) navigating the healthcare system. Findings also revealed that COVID-19 exacerbates financial burden for some caregivers. CONCLUSIONS: Building upon our prior work, we have adapted the conceptual model of financial burden to reflect perspectives of AYAs, oncology providers, and now, caregivers. An important next step is to develop a reliable and valid self-report measure of financial burden among caregivers of AYA cancer survivors.
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COVID-19 , Sobreviventes de Câncer , Neoplasias , Adolescente , Sobreviventes de Câncer/psicologia , Cuidadores/psicologia , Estresse Financeiro , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Adulto JovemRESUMO
PURPOSE: Telemedicine use during the COVID-19 pandemic among financially distressed patients with cancer, with respect to the determinants of adoption and patterns of utilization, has yet to be delineated. We sought to systematically characterize telemedicine utilization in financially distressed patients with cancer during the COVID-19 pandemic. METHODS: We conducted a cross-sectional analysis of nationwide survey data assessing telemedicine use in patients with cancer during the COVID-19 pandemic collected by Patient Advocate Foundation (PAF) in December 2020. Patients were characterized as financially distressed by self-reporting limited financial resources to manage out-of-pocket costs, psychological distress, and/or adaptive coping behaviors. Primary study outcome was telemedicine utilization during the pandemic. Secondary outcomes were telemedicine utilization volume and modality preferences. Multivariable and Poisson regression analyses were used to identify factors associated with telemedicine use. RESULTS: A convenience sample of 627 patients with cancer responded to the PAF survey. Telemedicine adoption during the pandemic was reported by 67% of patients, with most (63%) preferring video visits. Younger age (19-35 age compared to ≥ 75 age) (OR, 6.07; 95% CI, 1.47-25.1) and more comorbidities (≥ 3 comorbidities compared to cancer only) (OR, 1.79; 95% CI, 1.13-2.65) were factors associated with telemedicine adoption. Younger age (19-35 years) (incidence rate ratios [IRR], 1.78; 95% CI, 24-115%) and higher comorbidities (≥ 3) (IRR; 1.36; 95% CI, 20-55%) were factors associated with higher utilization volume. As area deprivation index increased by 10 units, the number of visits decreased by 3% (IRR 1.03, 95% CI, 1.03-1.05). CONCLUSIONS: The rapid adoption of telemedicine may exacerbate existing inequities, particularly among vulnerable financially distressed patients with cancer. Policy-level interventions are needed for the equitable and efficient provision of this service.
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COVID-19 , Neoplasias , Telemedicina , Adulto , Estudos Transversais , Humanos , Neoplasias/terapia , Pandemias , Telemedicina/métodos , Adulto JovemRESUMO
PURPOSE: Financial toxicity can have a major impact on the quality of life of cancer survivors but lacks conceptual clarity and understanding of the interrelationships of the various aspects that constitute financial toxicity. This study aims to extract major drivers and mediators along the pathway from cancer-related costs to subjective financial distress from the patients' experiences to establish a better understanding of financial toxicity as a patient-reported outcome. METHODS: Qualitative semistructured interviews with 39 cancer patients were conducted in Germany and addressed patient experiences with cancer-related financial burden and distress in a country with a statutory health care system. Transcripts were analyzed using content analysis. RESULTS: Several aspects of financial burden need to be considered to understand financial toxicity. The assessment of the ability to make ends meet now or in the future and the subjective evaluation of financial adjustments-namely, the burden of applied financial adjustments and the availability of financial adjustment options-mediate the connection between higher costs and subjective financial distress. Moreover, bureaucracy can influence financial distress through a feeling of helplessness during interactions with authorities because of high effort, non-traceable decisions, or one's own lack of knowledge. CONCLUSION: We identified four factors that mediate the impact of higher costs on financial distress that should be addressed in further studies and targeted by changes in policies and support measures. Financial toxicity is more complex than previously thought and should be conceptualized and understood more comprehensively in measurements, including the subjective assessment of available adjustment options and perceived burden of financial adjustments.
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Neoplasias , Qualidade de Vida , Formação de Conceito , Efeitos Psicossociais da Doença , Alemanha , Humanos , Pesquisa QualitativaRESUMO
PURPOSE: To evaluate for inter-individual differences in financial distress and identify demographic, clinical, and symptom characteristics associated with higher levels of financial distress. METHODS: Patients (n = 387) were enrolled prior to breast cancer surgery and followed for 12 months. Financial distress was measured using a 0 (no problem) to 10 (severe problem) numeric rating scale. Hierarchical linear modeling was used to evaluate for inter-individual differences in trajectories of financial distress and characteristics associated with financial distress at enrollment and over 12 months. RESULTS: Patients' mean age was 55.0 (± 11.7) years and the majority underwent breast conservation surgery (80.6%). Mean financial distress score prior to surgery was 3.3 (± 3.4; range 0 to 10). Unconditional model for financial distress demonstrated no significant changes over time (-0.006/month). Younger age, lower income, receipt of an axillary lymph node dissection and adjuvant chemotherapy, and lower attentional function were associated with higher preoperative levels of financial distress. CONCLUSION: Risk factors identified in this study can be used to inform clinicians regarding the need to initiate financial discussions and social work referrals for some patients. Additional clinical or system level interventions should be considered for vulnerable groups with these risk factors.
Assuntos
Neoplasias da Mama , Mama , Neoplasias da Mama/cirurgia , Feminino , Humanos , Individualidade , Excisão de Linfonodo , Mastectomia , Pessoa de Meia-IdadeRESUMO
PURPOSE: In efforts to understand financial distress (FD) associated with advanced cancer care from the perspective of both patients with incurable disease and their spousal caregivers, we assessed FD in both members of the couple, identified symptom and quality of life (QOL) correlates, and examined the potential role of illness communication. METHODS: Patients undergoing treatment for stage III/IV lung cancer or a grade III/IV primary brain tumor and their spousal caregivers (n = 76 dyads) completed measures of somatic and affective symptoms including FD, physical and mental QOL, and ease of engaging in illness communication. Patients and caregivers additionally rated their perception of each other's symptoms, including FD. RESULTS: FD was endorsed by both patients (any FD 62.7%; high FD 24%) and spousal caregivers (any FD 64.7%; high FD 32.3%). Self-reported FD was significantly correlated (partial r = .52, p < .001) within couples. FD was associated with greater symptoms of anxiety (r = .29, p = .01; r = .31, p = .01), depression (r = 29, p = 01; r = .39, p = .001), and poorer physical QOL(r = - .25, p = .03; r = - .25, p = .001) for patients and caregivers, respectively. For patients, FD was additionally associated with poorer mental QOL(r = - .44, p < .001). Caregivers accurately perceived patient FD, yet patients tended to underreport their caregiver's FD by almost an entire point (t = 2.8, p = .007). A 3-way interaction (FD X role X illness communication) revealed (b = .40, p = .041) that illness communication moderated the association between FD and physical QOL for spouses so that spouses who reported less ease of illness communication demonstrated a stronger association between financial distress and physical QOL (b = - 2.08, p < .001) than those reporting greater ease of engaging in illness communication (b = .49, p = .508). CONCLUSION: In the advanced cancer setting, FD is prevalent in both patients and their spousal caregivers and associated with psychological distress and poor physical QOL. Results suggest that optimal FD assessment should include patients and spouses, and spouse's ease of engaging with illness communication may be a potential target for future intervention studies.