More than half of working-age cancer survivors (age 18-64 years) in the United States have experienced cancer-associated financial hardship, such as accumulating debt, filing for bankruptcy, worrying about their financial stability, or delaying or foregoing medical care because of concerns about cost.1 Not surprisingly, loss of employment and decreased earnings, which may result from working less hours or taking unpaid leave, are associated with greater risk and severity of financial hardship.
Found Items
We Should Treat Financial Toxicity With Curative, Rather Than Palliative, Intent
In the companion to this article, Jeong et al1 present new findings regarding the use of charity assistance among patients beginning treatment with abiraterone acetate or enzalutamide. Their primary findings—one third of patients with prostate cancer require charity assistance to afford these medications—highlight the adverse consequences for patients resulting from the high cost of cancer drugs, particularly those with Medicare Part D as their primary drug benefit. This study provides additional support for calls to reform the Part D benefit structure to improve the affordability of cancer drugs.
Financial Toxicity With Cardiovascular Disease Management: A Balancing Act for Patients
Warraich, H. J., Ali, H. J. R., Nasir, K.
Out-of-Pocket Annual Health Expenditures and Financial Toxicity From Healthcare Costs in Patients With Heart Failure in the United States
Background Heart failure (HF) poses a major public health burden in the United States. We examined the burden of out-of-pocket healthcare costs on patients with HF and their families. Methods and Results In the Medical Expenditure Panel Survey, we identified all families with ≥1 adult member with HF during 2014 to 2018. Total out-of-pocket healthcare expenditures included yearly care-specific costs and insurance premiums. We evaluated 2
Burdensome Transitions of Care for Patients with End-Stage Liver Disease and Their Caregivers
BACKGROUND: Patients with end-stage liver disease (ESLD) experience frequent readmissions; however, studies focused on patients’ and caregivers’ perceptions of their transitional care experiences to identify root causes of burdensome transitions of care are lacking. AIM: To explore the transitional care experiences of patients with ESLD and their caregivers in order to identify their supportive care needs. METHODS: We conducted interviews with 15
The experience of financial toxicity among advanced melanoma patients treated with immunotherapy
Purpose To measure financial toxicity and explore its association with quality of life (QOL) in an emerging population of survivors: advanced melanoma patients treated with immunotherapy. Design Cross-sectional survey and medical record review. Sample 106 survivors (39% response). Median time since start of immunotherapy was 36.4 months
Financial Hardship and Psychological Resilience during COVID-19: Differences by Race/Ethnicity
OBJECTIVES: Research on the impact of COVID-19 among older adults has primarily focused on relatively acute virus outcomes, but it is likely financial hardships during this time have eroded the adaptive capacity of older adults. It is also possible these impacts vary by race and ethnicity. We examine changes in psychological resilience (PR) among older adults before and during the pandemic to determine whether financial hardships and other stressors have
COVID-19 and financial toxicity in patients with renal cell carcinoma
URPOSE: To ascertain renal cell carcinoma (RCC) financial toxicity on COVID-19 during the COVID-19 crisis as patients are struggling with therapeutic and financial implications. METHODS: An online survey was conducted from March 22 to March 25, 2020. It included baseline demographic, clinicopathologic, treatment-related information, anxiety levels related to COVID-19, questions related to financial concerns about COVID-19 as well as the validated
Validation of Korean Version of the COmprehensive Score for financial Toxicity (COST) Among Breast Cancer Survivors
PURPOSE: Little is known about the impact of financial toxicity in disease-free breast cancer survivors. We aim to validate the COST in Korean (COST-K) and evaluate financial toxicity among disease-free breast cancer survivors. MATERIALS AND METHODS: We conducted linguistic validation following a standardized methodology recommended by FACITtrans. For psychometric validation, we conducted a cross-sectional survey with 4,297
How palliative care teams can mitigate financial toxicity in cancer care
The disruption to patient and family well-being introduced by the rising costs of cancer care is a growing clinical problem. In addition to logistical questions, there is a compelling, existential one: “How should healthcare teams address patient and caregiver distress and uncertainty from financial toxicity?” We argue that the principles and practice of palliative care can help alleviate this element and often unaddressed component of human suffering.
Patient-reported financial toxicity in multiple sclerosis: Predictors and association with care non-adherence
OBJECTIVE: To measure the longitudinal changes in three domains of financial hardship (i.e., financial worry, cost-related care non-adherence, material hardship) in patients with MS. METHODS: A convenience sample of 559 adult patients with a known diagnosis of MS visiting a single outpatient neurology clinic between July 2018 to February 2020 were approached. Patients completed surveys at baseline and 3, 6, 9, and 12 months post-enrollment.
Longitudinal changes of financial hardship in patients with multiple sclerosis
BACKGROUND: Multiple sclerosis (MS) results in considerable financial burdens due to expensive treatment and high rates of disability, which could both impact care non-adherence. OBJECTIVE: To measure financial toxicity in MS patients, identify its predictors and association with care non-adherence. METHODS: Adult MS patients visiting neurology clinic (June 2018 to February 2019) were consented to complete a survey. Financial toxicity was measured
A qualitative analysis and development of a conceptual model assessing financial toxicity in cancer patients accessing the universal healthcare system
PURPOSE: This paper illustrates a conceptual model for a new patient-reported outcome measure (PROM) aimed at measuring financial toxicity (FT) in oncological setting in Italy, where citizens are provided universal healthcare coverage. METHODS: Focus groups with overall 34 patients/caregivers in three different Italian centers (from Northern, Centre, and Southern Italy) and an open-ended survey with 97 medical oncologists were undertaken.
The impacts of health insurance on financial strain for people with chronic diseases
BACKGROUND: Due to ongoing expenses for both short-term and long-term needs for health services, people with chronic diseases tend to struggle with financial hardship. Health insurance is employed as a useful tool in aiding people to solve such financial strain. This study aims to examine and compare the impacts of public and private health insurance on solving financial barriers for people with chronic diseases. METHODS: This research obtained an
Financial Toxicity of Cancer Care: An Analysis of Financial Burden in Three Distinct Health Care Systems
PURPOSE: The financial toxicity of cancer care is a source of significant distress for patients with cancer. The purpose of this study is to understand factors associated with financial toxicity in three distinct care systems. METHODS: We conducted a cross-sectional survey of patients in three care systems, Stanford Cancer Institute (SCI)
Does health insurance protect against risk of financial catastrophe for pancreatic tumor care? A cost-based review of patients undergoing pancreatic resection at an academic institution
BACKGROUND: Pancreatic cancer is a leading cause of financial insolvency and cancer related deaths in the United States. The risk of catastrophic health expenditure (CHE) was calculated for patients undergoing pancreatic resection at an academic institution. METHODS: Patients who underwent pancreatic resection between 2013 and 2017 were identified through an institutional cancer registry. A CHE was an out-of-pocket payment (OOP) > 10% of
Association between Financial Hardship and Symptom Burden in Patients Receiving Maintenance Dialysis: A Systematic Review
PURPOSE: To identify a cut-off score for the COmprehensive Score for financial Toxicity (COST) to predict a clinical implication of a high level of financial toxicity (FT). METHODS: A total of 640 cancer patients were recruited from three regional hospitals in Hong Kong. They completed a questionnaire comprising the COST measure and the Functional Assessment of Cancer Therapy – General (FACT-G) instrument. The cut-off score for the COST that
Identifying a cut-off score for the COST measure to indicate high financial toxicity and low quality of life among cancer patients
BACKGROUND: Many patients on maintenance dialysis experience financial hardship. Existing studies are mainly cost analyses that quantify financial hardship in monetary terms, but an evaluation of its impact is also warranted. This review aims to explore the definition of financial hardship and its relationship with symptom burden among patients on dialysis. METHODS: A literature search was conducted in November 2020, using six electronic
Current Practices for Screening and Addressing Financial Hardship within the NCI Community Oncology Research Program
BACKGROUND: Cancer-related financial hardship is associated with poor care outcomes and reduced quality of life for patients and families. Scalable intervention development to address financial hardship requires knowledge of current screening practices and services within community cancer care. METHODS: The NCI Community Oncology Research Program (NCORP) 2017 Landscape Assessment survey assessed financial screening and financial
The price of mental well-being in later life: the role of financial hardship and debt
Stressful life events such as a recession, could be devastating on a macro and micro level. Although there have been a number of articles written examining the health effects of the recession, little is known about age differences in the relationship between financial stressors and health pre and post the 2008 recession. Using the Health and Retirement study, we investigated the relationship between two forms of financial hardships, mental and physical
Pediatric primary care and subspecialist providers’ comfort, attitudes and practices screening and referring for social determinants of health
BACKGROUND: Early detection and management of poverty-related disorders is a recommended pediatric practice; however, little is known about variations of practice between pediatric primary care physicians and subspecialists. The objectives of this study were to assess (1) provider perceptions and attitudes toward caring for low-income children in an urban academic medical center, and (2) variations between primary care physicians and subspecialists
Financial Toxicity in Patients with Brain and Spine Metastases
OBJECTIVE: Financial toxicity associated with cancer treatment has a deleterious impact on patient outcomes but has not been well characterized among patients with metastatic cancers. We characterize the extent of financial
Direct medical costs after surgical or nonsurgical treatment for degenerative lumbar spinal disease: A nationwide matched cohort study with a 10-year follow-up
OBJECTIVE: The demand for treating degenerative lumbar spinal disease has been increasing, leading to increased utilization of medical resources. Thus, we need to understand how the budget of insurance is currently used. The objective of the present study is to overview the utilization of the National Health Insurance Service (NHIS) by providing the direct insured cost between patients receiving surgery and patients receiving nonsurgical treatment for
Financial toxicity is common among gynecologic cancer patients
Harrison, R. F., Meyer, L. A.
Emerging Understanding About the Impact of Financial Toxicity Related to Cancer: Canadian Perspectives
OBJECTIVE: This article offers an overall summary of the current situation concerning cancer-related financial toxicity from the perspective of Canadian patents and survivors. The focus is on describing the financial effects experienced by the patient and survivor and family, which they attribute to the cancer diagnosis, treatment, and other factors that contribute to their financial distress. DATA SOURCES: The information was drawn from peer-
Disparities in health care affordability among childhood cancer survivors persist following the Affordable Care Act
BACKGROUND: The Affordable Care Act (ACA) included many provisions that may have improved access to care for childhood cancer survivors (CCS). In this study, we sought to compare health insurance coverage and the affordability of health care among adult childhood CCS before and after the implementation of the ACA.
A national cross-sectional survey of financial toxicity among bladder cancer patients
OBJECTIVE: Financial toxicity (FT) has been defined as the patient-level impact of the costs of cancer care. Our objective was to better characterize FT among bladder cancer patients as well as oncologic, demographic and insurance characteristics related to FT. METHODS: We conducted a cross-sectional survey of the Bladder Cancer Advocacy Network Patient Survey Network using the validated COST (COmprehensive Score for financial Toxicity)
The association of health insurance literacy and numeracy with financial toxicity and hardships among colorectal cancer survivors
PURPOSE: In this study, we examined the association of financial hardship measured by material financial burden and financial toxicity with health insurance literacy and numeracy among colorectal cancer survivors. The lack of evidence on the impact of cost-related health literacy, specifically health insurance literacy and numeracy, on financial toxicity among cancer survivors warrants further research. METHODS: Between January and November
Measuring financial toxicity in Australian cancer patients – Validation of the COmprehensive Score for financial Toxicity (FACT COST) measuring financial toxicity in Australian cancer patients
AIM/BACKGROUND: The FACT COST is a patient-rated measure of financial toxicity, developed and validated in a North American population. We aimed to confirm the validity and reliability of the FACT COST in Australian cancer patients, because the Australian healthcare funding structure is different to that in North America. METHODS: A single center, cross-sectional study design investigated financial toxicity in oncology outpatients. Eligible adults had
Assessing the reliability and validity of comprehensive score for financial toxicity (COST) among radiation oncology patients in India: a cross-sectional pilot study
BACKGROUND: Besides physical toxicity, cancer care imposes significant financial distress referred to as financial toxicity (FT). FT has become a growing concern among cancer patients. Researchers have associated FT among cancer patients with clinical outcomes like mortality, poor quality of life and non-adherence. Currently, no reliable tools are available for assessing FT among cancer patients in India. The aim of this pilot study was to test the
Development and Validation of Subjective Financial Distress Questionnaire (SFDQ): A Patient Reported Outcome Measure for Assessment of Financial Toxicity Among Radiation Oncology Patients
BACKGROUND: Financial toxicity is a consequence of subjective financial distress experienced by cancer patients as a result of treatment expenditures. Financial toxicity has been associated with poor quality of life, early mortality, and non-adherence. It is evident from the literature that the currently available instruments for the assessment of financial toxicity do not measure coping and support seeking domains. The aim of this study was to develop an
Patient perspectives on the physical, psycho-social, and financial impacts of diabetic foot ulceration and amputation
AIMS: Diabetic foot ulcers (DFUs) and ulceration are complex and lifelong problems for patients with diabetes which dramatically increase mortality rates. This qualitative study sought to capture detailed personal accounts and insights from patients with a clinical history of DFUs and amputations to better understand patient experiences. METHODS: Fifteen patients from a tertiary referral center that treats diabetic foot problems were approached for participation. Inclusion criteria included having at least one DFU and being of white, Native American, or Hispanic background. Interviews were conducted by telephone by study staff trained in qualitative data gathering and audio recorded. RESULTS: The main themes that emerged around impacts included the heavy burden of managing care, significant loss of ambulatory function, economic stress due to medical care costs and job loss, and emotional suffering tied to these stressors. CONCLUSIONS: These data illuminate common social and personal impacts of diabetic foot problems across an ethnically and racially diverse and predominantly low-income US sample that expand our understanding of related declines in well-being. Our results indicate a need for proactive mental health assessment post DFUs diagnosis and the diversification of hospital and community-based support systems.
Correlation Between Financial Toxicity, Quality of Life, and Patient Satisfaction in an Insured Population of Breast Cancer Surgical Patients: A Single-Institution Retrospective Study
BACKGROUND: The relationship between treatment-related, cost-associated distress “financial toxicity” (FT) and quality-of life (QOL) in breast cancer patients remains poorly characterized. This study leverages validated patient-reported outcomes measures (PROMs) to analyze the association between FT and QOL and satisfaction among
Relationship Between Financial Toxicity and Surgical Treatment for Early-Stage Breast Cancer: A Propensity Score-Matched Comparison of Breast-Conserving Therapy and Mastectomy
BACKGROUND: Financial toxicity (FT) can lead to decreased quality of life and poor treatment outcomes. However, there is limited published data on the extent to which the various surgical treatment approaches for early-stage breast cancer are determinants for FT. STUDY DESIGN: We performed a single-institution cross-sectional survey of adult female patients with stage 0 to II breast cancer undergoing unilateral breast-conserving therapy or unilateral
Financial toxicity in cancer care in India: a systematic review
Although financial toxicity is widely acknowledged to be a potential consequence of costly cancer treatment, little is known about its prevalence and outcome among the Indian population. In this study, we systematically reviewed the prevalence, determinants, and consequences of financial toxicity among patients with cancer in India. 22 studies were included in the systematic review. The determinants of financial toxicity include household income, type of
Financial Toxicity in People With Inflammatory Bowel Disease
Financial toxicity is the term for problems our patients suffer related to the cost of medical care. It differs from both direct and indirect costs and is surprisingly common in patients that most would consider well-insured. This editorial discusses steps we can take to limit our patients’ suffering.
Financial stress in emerging adults with type 1 diabetes in the United States
OBJECTIVE: To describe the relationships among financial stress factors (perceived stress, financial stress, and financial independence) and psychological factors (depressive symptoms, trait anxiety, and diabetes distress) on self-management outcomes (HbA1c and diabetes-related quality of life) in emerging adults with type 1 diabetes. RESEARCH DESIGN AND METHODS: A descriptive, correlational, cross-sectional study examined 413 emerging
Financial Toxicity Among Patients with Prostate, Bladder, and Kidney Cancer: A Systematic Review and Call to Action
CONTEXT: Financial toxicity (FT) refers to the detrimental effects of financial strain caused by a cancer diagnosis on the well-being of patients and their families. It is highly prevalent among cancer patients and has been associated with inferior clinical outcomes. OBJECTIVE: To summarize the literature regarding FT among patients with prostate, bladder, and kidney cancer, and to propose a framework for future FT investigations.
What Factors Are Associated with Increased Financial Burden and High Financial Worry For Patients Undergoing Common Hand Procedures?
BACKGROUND: Few studies have examined whether orthopaedic surgery, including hand surgery, is associated with patients’ financial health. We sought to understand the level of financial burden and worry for patients undergoing two common hand procedures-carpal tunnel release and open reduction and internal fixation for a distal radius fracture-as well as to determine factors associated with a higher financial burden and worry.
Burden, impact, and needs of caregivers of children living with mental health or neurodevelopmental conditions in low-income and middle-income countries: a scoping review
Ademosu, T., Ebuenyi, I., Hoekstra, R. A., Prince, M., Salisbury, T. This scoping review synthesises previous research on caregivers' experiences and perspectives of caring for a child with a mental health or neurodevelopmental condition while living in low-income and...
Financial toxicity in patients with gynecologic malignancies: a cross sectional study
OBJECTIVE: To evaluate financial toxicity and assess its risk factors among patients with gynecologic cancers. METHODS: This is a cross sectional study that included 2 survey tools, as well as patient demographics, disease characteristics, and treatment regimen. Financial toxicity is measured by validated Comprehensive Score for Financial Toxicity (COST) tool. Participants were also asked to complete a 55-question-survey on attitudes and
Financial Toxicity in Women With Breast Cancer Receiving Radiation Therapy: Final Results of a Prospective Observational Study
PURPOSE: We sought to quantify financial toxicity (FT) present in a prospective cohort of women with breast cancer (BC) receiving radiation therapy (RT), identify predictors of FT, correlate FT with health-related quality of life (QoL), and determine whether duration of RT is associated with FT. METHODS AND MATERIALS: Consecutive patients with stage I-III BC completed Functional Assessment of Cancer Therapy-G7 (FACT-G7), a tailored FT questionnaire, and
Relationship Between Multiple Measures of Financial Hardship and Glycemic Control in Older Adults With Diabetes
Aim: To examine the relationship between multiple measures of financial hardship and glycemic control in older adults with diabetes. Methods: Using data from Health and Retirement Study (HRS), we investigated four measures of financial hardship: difficulty paying bills, ongoing financial strain, decreasing food intake due to money, and taking less medication due to cost. Using linear regression models, we investigated the relationship between each measure,
Patient-reported financial toxicity, quality of life, and health behaviors in insured US cancer survivors
PURPOSE: Fighting cancer is a costly battle, and understanding the relationship between patient-reported financial toxicity (FT) and health outcomes can help inform interventions for post-treatment cancer survivors. METHODS: Stages I-III solid tumor, insured US cancer survivors (N = 103) completed a survey addressing FT (as measured by the standardized COST measure) and clinically relevant health outcomes (including health-related quality of life
Willingness to Pay for National Health Insurance: A Contingent Valuation Study Among Patients Visiting Public Hospitals in Melaka, Malaysia
BACKGROUND: The Malaysian public healthcare system is tax funded, with healthcare costs highly subsidized by the Government. The current health financing is not sustainable to cover all the healthcare resources. Introducing a national health insurance (NHI), a prepayment method, would protect the population from financial hardship by reducing out-of-pocket payment, minimizing the barrier to accessing health and achieving equitable healthcare.
Debt-Related Financial Hardship and Health
Recent research shows personal financial debt is an important socioeconomic determinant of health, but the mechanisms through which it operates are not well understood. This article uses data from a mixed-methods study to explore how changes in spending and behavior that result from debt have salient health consequences in a cross-
Understanding the strategies rural cancer patients and survivors use to manage financial toxicity and the broader implications on their lives
PURPOSE: To explore strategies rural Australians use to cope with the financial consequences of their cancer diagnosis and how that impacts on their lives. METHODS: Twenty adult cancer patients/survivors residing in regional-remote areas of Australia were purposively sampled and participated in audio-recorded, semi-structured interviews. When data saturation was reached, thematic analysis was employed to analyse the data. RESULTS:
Adverse Childhood Experiences and Oral Health Outcomes in U.S. Children and Adolescents: A Cross-Sectional Study of the 2016 National Survey of Children’s Health
This study investigated the cross-sectional associations between exposure to nine Adverse Childhood Experiences (ACEs) and U.S. children’s and adolescent’s oral health outcomes. Data from 41,294 participants of the 2016 National Survey of Children’s Health (NSCH) were analyzed. Past year exposure to ACE, oral health outcomes (decayed teeth, bleeding gums, and condition of the teeth), and child and caregiver sociodemographic factors were
Systematic review of financial burden assessment in cancer: Evaluation of measures and utility among adolescents and young adults and caregivers
many patients and caregivers. Adolescents and young adults (AYAs) with cancer are particularly vulnerable. Financial burden measures exist but have varying evidence for their validity and reliability. The goal of this systematic review is to summarize and evaluate measures of financial burden in cancer and describe their potential utility among AYAs
Re-Validation of the Comprehensive Score for Financial Toxicity (COST): Assessing the Scale’s Utility in Chronic Disease Populations
OBJECTIVE: To report the psychometric properties of the COmprehensive Score for financial Toxicity (COST) patient-reported outcome measure (PROM), an 11-item scale previously validated among patients diagnosed with cancer and receiving chemotherapy. METHODS: Data come from a cross-sectional survey (n = 2755 response rate of
A Scoping Review of Behavioral Interventions Addressing Medical Financial Hardship
Little information has been compiled across studies about existing interventions to mitigate issues of medical financial hardship, despite growing interest in health care delivery. The purpose of this qualitative systematic scoping review was to examine content and outcomes of interventions to address medical financial hardship. PRISMA guidelines were applied to present results using PubMed, Scopus, and CINAHL, published between January 1980
Perceived Financial Insecurity Impacts Healthcare Decision-Making Among Patients With Sinusitis
OBJECTIVES/HYPOTHESIS: The economic burden of sinusitis is significant, and socioeconomic factors can impact patient decision-making. The purpose of this study was to examine the impact of perceived financial insecurity on healthcare decision-making and treatment compliance among sinusitis patients. STUDY DESIGN: Cross-sectional study using the 2018 National Health Interview Survey. METHODS: Survey responses to nine questions regarding
Financial Toxicity Following Surgical Treatment for Breast Cancer: A Cross-sectional Pilot Study
BACKGROUND: Despite growing national attention, there is limited understanding of the patient- and treatment-level characteristics related to treatment cost-associated distress (“financial toxicity”) in breast cancer patients. Our aim is to identify risk factors for financial toxicity amongst breast cancer patients undergoing surgical treatment. METHODS: This is a single-institution cross-sectional survey of adult female breast cancer patients who underwent
Implications of financial toxicity in the lives of cancer patients: a reflection
OBJECTIVE: To reflect on the understanding of financial toxicity, as an adverse event of cancer diagnosis and treatment, and its implications on the quality of life of these patients. METHOD: Reflexive study, based on the international literature about the concept of financial toxicity and its relationship with quality of life. RESULTS: Financial toxicity is related to the financial difficulties associated with cancer and its treatment, which occur in the
Current state of funded National Institutes of Health grants focused on individuals living with advanced and metastatic cancers: a portfolio analysis
PURPOSE: The National Cancer Institute has supported cancer survivorship science for many years, yet few funded studies have examined the needs of individuals living with cancer that is advanced or has metastasized. This report analyzes currently active National Institutes of Health (NIH) grants focused on survivorship for patients living with advanced or metastatic cancers to identify emerging research topics in this population and gaps in current science.
Assessing the financial toxicity in Tunisian cancer patients using the Comprehensive Score for Financial Toxicity (COST)
BACKGROUND: Cancer care-related out-of-pocket expenses and financial toxicity (FT) are a rising burden for patients. We aimed to evaluate patient-reported FT and to identify relevant correlates within a Tunisian population. METHODS: We conducted a survey using the 11-item Comprehensive Score for Financial Toxicity (COST) that could range from 0 = high to 44 = low. FT was grade 0 if ≥ 26, grade 1 = (14-25), grade 2 = (1-13), and grade 3 = 0. Scores
Considerations for treatment duration in responders to immune checkpoint inhibitors
Immune checkpoint inhibitors (ICIs) have improved overall survival for cancer patients, however, optimal duration of ICI therapy has yet to be defined. Given ICIs were first used to treat patients with metastatic melanoma, a condition that at the time was incurable, little attention was initially paid to how much therapy would be needed for a durable response. As the early immunotherapy trials have matured past 10 years, a significant per cent of patients have
Racial and ethnic variations in caregiving-related physical, emotional, and financial strain during COVID-19 among those caring for adult cancer patients
PURPOSE: Cancer caregiving is shown to be a burdensome experience in typical times. The purpose of this study was to describe cancer caregivers’ emotional, physical, and financial strain during the COVID-19 pandemic and compared to preCOVID-19, and explore racial and ethnic variations in caregiver strain. METHODS: We conducted a cross-sectional online survey using Lucid, LLC, incorporating quotas for race, ethnicity, gender and age. Caregivers
Measures of financial burden for families dealing with serious illness: A systematic review and analysis
BACKGROUND: Many families coping with serious illness report experiencing financial burden, which negatively impacts coping and quality of life. Financial burden, however, is a complex construct that has been inconsistently operationalized in the literature. AIM: To review the available literature to identify, and describe the properties of, measurement tools or scales used to assess financial burden, including financial stress and strain, for families
QALYs and medical costs saved from prevention of a cancer: Analysis of nation-wide real-world data of Taiwan with lifetime horizon
BACKGROUND/PURPOSE: To quantify savings of loss-of-QALE (quality-adjusted life expectancy) and lifetime medical costs from prevention of different cancers. METHODS: We collected nation-wide data on 808,700 new cancer cases of 14 different organ systems and followed them from 1998 to 2014 in Taiwan. We also collected 13,005 cancer patients from a medical center and 47,320 repeated measurements of quality of life (QoL) of EQ-5D to obtain
Cost-Related Nonadherence to Medications Among US Adults With Chronic Liver Diseases
OBJECTIVE: To estimate the prevalence, risk factors, and consequences of cost-related medication nonadherence (CRN) in individuals with chronic liver diseases (CLDs) in the United States. PATIENTS AND METHODS: Using the
Emotional well-being and pain could be a greater determinant of quality of life compared to motor severity in cervical dystonia
Non-motor symptoms (NMS) occur in patients with cervical dystonia (CD) but with variable frequencies and impact on health-related quality of life (HRQoL). To define non-motor and motor profiles and their respective impact on HRQoL in CD patients using the newly validated Dystonia Non-Motor Symptoms Questionnaire (DNMSQuest). In an observational prospective multicentre case-control study, we enrolled 61 patients with CD and 61 age- and sex-
The Out-of-Pocket Cost Burden of Cancer Care-A Systematic Literature Review
BACKGROUND: Out-of-pocket costs pose a substantial economic burden to cancer patients and their families. The purpose of this study was to evaluate the literature on out-of-pocket costs of cancer care. METHODS: A systematic literature review was conducted to identify studies that estimated the out-of-pocket cost burden faced by cancer patients and their caregivers. The average monthly out-of-pocket costs per patient were reported/estimated and
Mental health of older people with mild and moderate intellectual disability in Australia
BACKGROUND: The progressive increase in life expectancy of people with intellectual disability (ID) has resulted in enhanced survival into old age and has also seen a growth in research on both lifelong and emerging ageing-related health issues. Health issues amongst provider-supported adults have been previously studied, but these studies have not always included older community-dwelling adults with ID. METHODS: A study examining the extent of
Financial Toxicity in Adolescents and Young Adults With Cancer: A Concept Analysis
BACKGROUND: A cancer diagnosis as an adolescent and young adult (AYA) poses exceptional challenges, including potential greater financial toxicity than older survivors experience who have had more time for career establishment and to build financial assets. Costs to patients have increased more than the past decade; prospects for AYA long-term survival have also increased. A better understanding of what financial toxicity is, how it presents, and the
Out-of-Pocket Costs Among Patients With a New Cancer Diagnosis Enrolled in High-Deductible Health Plans vs Traditional Insurance
IMPORTANCE: The financial burden of a cancer diagnosis is increasing rapidly with advances in cancer care. Simultaneously, more individuals are enrolling in high-deductible health plans (HDHPs) vs traditional insurance than ever before. OBJECTIVE: To characterize the out-of-pocket costs (OOPCs) of cancer care for individuals in HDHPs vs traditional insurance plans. DESIGN, SETTING, AND PARTICIPANTS: This retrospective cohort study used the
The financial impact of cancer care on renal cancer patients
INTRODUCTION Advances in novel treatment options may render renal cell cancer (RCC) patients susceptible to the financial toxicity (FT) of cancer treatment, and the factors associated with FT are unknown. MATERIALS AND METHODS: Eligible patients were ≥ 18 years old and had a diagnosis of stage IV RCC for at least 3 months. Patients were recruited from Princess Margaret Cancer Centre and Sunnybrook Odette Cancer Centre (Toronto, Canada). FT
Incidence of Catastrophic Health Expenditure and Its Determinants in Cancer Patients: A Systematic Review and Meta-analysis
BACKGROUND: Cancer is the third leading cause of mortality in the world, and cancer patients are more exposed to financial hardship than other diseases. This paper aimed to review studies of catastrophic healthcare expenditure (CHE) in cancer patients, measure their level of exposure to CHE, and identify factors associated with incidence of CHE. METHODS: This study is a systematic review and meta-analysis. Several databases were searched until
Financial worry and psychological distress among cancer survivors in the United States, 2013-2018
BACKGROUND: A growing proportion of cancer survivors experience financial toxicity. However, the psychological burden of cancer costs and associated mental health outcomes require further investigation. We assessed prevalence and predictors of self-reported financial worry and mental health outcomes among cancer survivors. PATIENTS AND METHODS: Data from the 2013-2018 National Health Interview Survey (NHIS) for adults reporting a
Financial Toxicity in People Living with Advanced Cancer: A New, Deadly, and Poorly Addressed Effect of Cancer and Necessary Treatment
OBJECTIVES: Advances in cancer treatments have allowed improved outcomes, even with advanced disease. However, this progress has resulted in a new toxic effect termed ‘financial toxicity.’ Financial toxicity severely impacts quality of life, even among those insured. The purpose of this article is to gain better understanding of this relatively new concept to better care for our patients, presented primarily from a US perspective. DATA SOURCES:
Burden of Parkinson’s Disease by Severity: Health Care Costs in the U.S. Medicare Population
BACKGROUND: Current understanding of the health care costs of Parkinson’s disease (PD) and the incremental burden of advanced disease is incomplete. OBJECTIVES: The aim of this study was to assess the direct economic burden associated with advanced versus mild/moderate PD in a prevalent national sample of elderly U.S. Medicare beneficiaries with a PD diagnosis. METHODS: Analyzing 100% fee-for-service Medicare claims from 2013, we
What’s the Cost? Measuring the Economic Impact of Pediatric Sepsis
Sepsis, life-threatening organ dysfunction secondary to infection, hospitalizes nearly 75,000 children each year in the United States. Most children survive sepsis. However, there is increasing recognition of the longer-term consequences of pediatric sepsis hospitalization on both the child and their family, including medical, psychosocial, and financial impacts. Here, we describe family spillover effects (the impact of illness on caregivers) of pediatric
The dynamic relationship between cancer and employment-related financial toxicity: an in-depth qualitative study of 21 Australian cancer survivor experiences and preferences for support
BACKGROUND: People with a cancer diagnosis experience physical and emotional impacts that may affect employment. Alongside cancer care costs, reduced ability to generate an income is a key contributor to financial toxicity which is associated with poor emotional wellbeing, quality of life, treatment adherence and survival. This study aimed to explore people’s experiences of changes to employment and their suggestions for how cancer
Connecting healthcare with income maximisation services, and their financial, health and well-being impacts for families with young children: a systematic review protocol
INTRODUCTION: Poverty has far-reaching and detrimental effects on children’s physical and mental health, across all geographies. Financial advice and income-maximisation services can provide a promising opportunity for shifting the physical and mental health burdens that commonly occur with financial hardship, yet awareness of these
Financial toxicity in cancer care in India: a systematic review
Although financial toxicity is widely acknowledged to be a potential consequence of costly cancer treatment, little is known about its prevalence and outcome among the Indian population. In this study, we systematically reviewed the prevalence, determinants, and consequences of financial toxicity among patients with cancer in India. 22 studies were included in the systematic review. The determinants of financial toxicity include household income, type of
Emotional distress among parent caregivers of adolescents with sickle cell disease: Association with patients and caregivers variables
Evidence suggests that impairment in caregiver wellbeing can alter the quality of care in children with sickle cell disease. We examined 121 parent caregivers of adolescents with sickle cell disease for emotional distress and disruptions to caregiver lifestyle and interests. Participants were predominantly mothers 92(76%) with mean age, 43.59 (SD = 6.39) years. Four in every ten caregivers had emotional distress, and this was predicted by frequent
Financial Hardship and Quality of Life Among Patients With Advanced Cancer Receiving Outpatient Palliative Care: A Pilot Study
BACKGROUND: Patients with advanced cancer are increasingly experiencing financial hardship (FH) and associated negative health outcomes. OBJECTIVE: The aims of this study were to describe FH and explore its relationship to quality of life (QOL) in patients with advanced cancer receiving outpatient palliative care (PC). METHODS: Validated questionnaires assessed FH, QOL dimensions, symptom burden, and sociodemographic and clinical characteristics
Supportive health education reduces health care utilization and costs in Latinas with breast cancer and their caregivers
PURPOSE: To compare costs and relative cost savings from reductions in unscheduled health services use for two 8-week psychosocial interventions (telephone interpersonal counseling [TIPC], supportive health education [SHE]) delivered by telephone to Latinas with breast cancer and their informal caregivers. Cost information is required before adopting supportive care interventions as part of routine care. There is limited information on costs of
Risk factors for financial toxicity in patients with gynecologic cancer
Financial toxicity describes the financial burden and distress that can arise for patients, and their family members, as a result of cancer treatment. It includes direct out-of-pocket costs for treatment and indirect costs such as travel, time, and changes to employment that can increase the burden of cancer. While high costs of cancer care have threatened the sustainability of access to care for decades, it is only in the past 10 years that the term “financial
Financial toxicity in cancer care: origins, impact, and solutions
Financial toxicity describes the financial burden and distress that can arise for patients, and their family members, as a result of cancer treatment. It includes direct out-of-pocket costs for treatment and indirect costs such as travel, time, and changes to employment that can increase the burden of cancer. While high costs of cancer care have
Emotional well-being and pain could be a greater determinant of quality of life compared to motor severity in cervical dystonia
Non-motor symptoms (NMS) occur in patients with cervical dystonia (CD) but with variable frequencies and impact on health-related quality of life (HRQoL). To define non-motor and motor profiles and their respective impact on HRQoL in CD patients using the newly validated Dystonia Non-Motor Symptoms Questionnaire (DNMSQuest). In an observational prospective multicentre case-control study, we enrolled 61 patients with CD
The Out-of-Pocket Cost Burden of Cancer Care-A Systematic Literature Review
BACKGROUND: Out-of-pocket costs pose a substantial economic burden to cancer patients and their families. The purpose of this study was to evaluate the literature on out-of-pocket costs of cancer care. METHODS: A systematic literature review was conducted to identify studies that estimated the out-of-pocket cost burden faced by cancer patients and their caregivers. The average monthly out-of-pocket costs per patient were
Financial worry and psychological distress among cancer survivors in the United States, 2013-2018
BACKGROUND: A growing proportion of cancer survivors experience financial toxicity. However, the psychological burden of cancer costs and associated mental health outcomes require further investigation. We assessed prevalence and predictors of self-reported financial worry and mental health outcomes among cancer survivors. PATIENTS AND METHODS: Data from the 2013-2018 National Health Interview Survey
Patient-reported financial toxicity, quality of life, and health behaviors in insured US cancer survivors
PURPOSE: Fighting cancer is a costly battle, and understanding the relationship between patient-reported financial toxicity (FT) and health outcomes can help inform interventions for post-treatment cancer survivors. METHODS: Stages I-III solid tumor, insured US cancer survivors (N = 103) completed a survey addressing FT (as measured by the standardized COST measure) and clinically relevant health outcomes (including health-
Understanding the strategies rural cancer patients and survivors use to manage financial toxicity and the broader implications on their lives
PURPOSE: To explore strategies rural Australians use to cope with the financial consequences of their cancer diagnosis and how that impacts on their lives. METHODS: Twenty adult cancer patients/survivors residing in regional-remote areas of Australia were purposively sampled and participated in audio-recorded, semi-structured interviews. When data saturation was reached, thematic analysis was employed to analyse the
Relationship Between Multiple Measures of Financial Hardship and Glycemic Control in Older Adults With Diabetes
Aim: To examine the relationship between multiple measures of financial hardship and glycemic control in older adults with diabetes. Methods: Using data from Health and Retirement Study (HRS), we investigated four measures of financial hardship: difficulty paying bills, ongoing financial strain, decreasing food intake due to money, and taking less medication due to cost. Using linear regression models, we investigated the
Economic vulnerability and non-initiation of antiretroviral therapy in India: a qualitative study
In India, many people living with HIV (PLHIV) do not successfully initiate antiretroviral therapy (ART) after diagnosis. We conducted a clinic-based qualitative study at the Y.R. Gaitonde Centre for AIDS Research in Chennai, Tamil Nadu to explore factors that influence ART non-initiation. We interviewed 22 men and 15 women; median age was 42 (IQR, 36-48) and median CD4+ was 395 (IQR, 227-601). Participants were
Supportive health education reduces health care utilization and costs in Latinas with breast cancer and their caregivers
To compare costs and relative cost savings from reductions in unscheduled health services use for two 8-week psychosocial interventions (telephone interpersonal counseling [TIPC], supportive health education [SHE]) delivered by telephone to Latinas with breast cancer and their informal caregivers. Cost information is required before adopting supportive care interventions as part of routine care.