Found Items

Economic burden of Down syndrome patients and psychological and social discrimination to female caregivers in Changsha, China

OBJECTIVE: To estimate the social and economic burden of Downs syndrome for patients and their families residing in Changsha, China. METHODS: An 160-item self-administered questionnaire was designed and distributed to the primary caregivers of the patients in March 2020. A total of 81 eligible participants had completed the questionnaire, among which 20 were excluded for incomplete data. A patient perspective was taken to estimate the economic

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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-

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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:

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S1417CD: A Prospective Multicenter Cooperative Group-Led Study of Financial Hardship in Metastatic Colorectal Cancer Patients

BACKGROUND: Financial toxicity is a growing problem in oncology, but no prior studies have prospectively measured the financial impact of cancer treatment in a diverse national cohort of newly diagnosed cancer patients. S1417CD was the first cooperative group-led multicenter prospective cohort study to evaluate financial hardship in metastatic colorectal cancer (mCRC) patients. METHODS: Patients aged 18 years or older within 120 days of mCRC diagnosis

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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

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The Role of Financial Security on Physical and Mental Health in Young-Midlife Couples Surviving Cancer

ACKGROUND: A cancer diagnosis carries a significant economic burden. Yet little is known about perceived financial security on the health of couples with a partner diagnosed with cancer. OBJECTIVE: The current study explored perceived financial security in young-midlife couples. METHODS: The study included 49 couples (aged 27-58 years) 1 to 3 years after diagnosis. Multilevel modeling was used to examine the association of perceived financial

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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

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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

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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

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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-

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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

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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

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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

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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:

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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

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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

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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

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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

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Interdisciplinary and Transdisciplinary Perspectives: On the Road to a Holistic Approach to Dementia Prevention and Care

Dementia, of which the most frequent form is Alzheimer’s disease, is a chronic and terminal condition with multi-factorial causes and numerous consequences on a patient’s life. Combining perspectives from different disciplines seems necessary for unraveling dementia’s entangled issues. Current dementia management is a multidisciplinary effort; however, integrating different disciplines as a holistic treatment process is often

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Health-related quality of life and emotional well-being after epilepsy surgery: A prospective, controlled, long-term follow-up

OBJECTIVE: To evaluate health-related quality of life (HRQOL) and emotional well-being in resective epilepsy surgery and nonoperated patients at long-term follow-up. METHODS: This is a prospective cohort study where patients undergoing presurgical work-up during 1995-1998 completed the Short-Form Health Survey (SF-36) and the Hospital Anxiety and Depression scale (HAD) at baseline, and 2 and 14 years after resective surgery or presurgical evaluation (nonoperated patients). SF-36 scores were compared to a normative population.

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Health-related quality of life in early Parkinson’s disease: the impact of nonmotor symptoms

Nonmotor symptoms (NMS) are common in patients with established Parkinson’s disease (PD) and have a major impact upon quality of life. We investigated the significance of NMS in relation to health-related quality of life (HRQoL) in patients with newly diagnosed PD. Patients and healthy controls were recruited as part of the Incidence of Cognitive Impairment in Cohorts with Longitudinal Evaluation in Parkinson’s Disease Study.

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Burden and Quality of Life of Family Caregivers of Stroke Patients

The purpose of this study was to identify the level of burden and quality of life of family caregivers of stroke patients and to investigate the correlation between burden, quality of life (including physical, social, psychological, and environmental domains), age of caregivers, and the care period. A descriptive correlational cross-sectional study was performed, with a convenience sample of family caregivers (n = 30) of stroke

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Poor emotional well-being is associated with rapid progression in amyotrophic lateral sclerosis

The study aimed to determine the impact of emotional well-being on disease aggressiveness and survival in amyotrophic lateral sclerosis (ALS). In 224 patients with ALS (without significant cognitive deficits) the revised ALS Functional Rating Scale (physical function), the ALS Assessment Questionnaire (ALSAQ-40) for health-related Quality of Life and survival data were collected. Data analysis comprised logistic regression, Kaplan-

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Associations between self-reported physical activity, quality of life, and emotional well-being in men with prostate cancer on active surveillance

OBJECTIVE: The relationship between physical activity (PA) and quality of life (QOL) relative to active treatment for prostate cancer (PCa) has been well-studied; however, little is known about this relationship during active surveillance (AS). Moreover, whether PA is associated with better emotional well-being (EWB) in men with low-risk PCa requires further investigation. Accordingly, we examined the association between self-

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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

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Improving clinical skills to support the emotional and psychological well-being of patients with end-stage renal disease: a qualitative evaluation of two interventions

BACKGROUND: Many patients with end-stage renal disease (ESRD) need and want improved emotional and psychological support. Explicit attention to patients’ emotional issues during consultations can help, yet renal consultants rarely address emotional problems. This qualitative study aimed to evaluate whether two different low-cost interventions could individually enable consultants to talk with patients about their emotional

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One-Year Linear Trajectories of Symptoms, Physical Functioning, Cognitive Functioning, Emotional Well-being, and Spiritual Well-being Among Patients Receiving Dialysis

BACKGROUND: This study evaluated 1-year linear trajectories of patient-reported dimensions of quality of life among patients receiving dialysis. STUDY DESIGN: Longitudinal observational study. SETTING & PARTICIPANTS: 227 patients recruited from 12 dialysis centers. FACTORS: Sociodemographic and clinical characteristics. MEASUREMENTS/OUTCOMES: Participants completed an hour-long interview monthly for 12

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The associations of illness perceptions and self-efficacy with psychological well-being of patients in preparation for joint replacement surgery

Patient well-being on referral to surgery likely affects their surgical experience yet few studies examine pre-surgical correlates of well-being. Guided by the Common Sense Model of Self-Regulation and Social Cognitive theory, this study examined whether illness and emotional representations, general and domain self-efficacy were associated with pre-surgical well-being. The pre-surgical assessment of a three-wave prospective study

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Emotional well-being of close relatives to stroke survivors

OBJECTIVE: To compare the well-being of stroke patients’ relatives with that of a reference group, and to identify variables related to the well-being of the relatives. DESIGN: Cross-sectional study. SETTING: Outpatient hospital department and patients’ and relatives’ own homes. SUBJECTS: Fifty-four patients one year after a stroke and their closest relatives. A reference population consisted of 419 elderly people drawn at

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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

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Family carers’ experience of caring for an older parent with severe and persistent mental illness

While the burden of caring for older people with chronic medical illness and dementia has been well documented, considerably less is known about how carers develop the strength and resilience to sustain this important role with older family members with mental illness. The aim of the study was to understand the lived experience of primary caregivers of older people with severe and persistent mental illness, and to explore

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Racial Disparities in Emotional Well-Being during Pregnancy

In light of persistent racial disparities in maternal and child health, it is important to understand the dynamics shaping outcomes for black mothers. We examine racial patterns in women’s emotional well-being regarding pregnancy (i.e., women’s reported happiness to be pregnant), which has been shown to have health consequences. Using the 2002-2017 National Survey of Family Growth (N = 6,163 pregnancies ending in

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Emotional Well-Being Is Impaired in Hidradenitis Suppurativa Patients

BACKGROUND: Hidradenitis suppurativa (HS) is a chronic inflammatory condition. OBJECTIVE: To measure emotional well-being in HS patients and compare to other populations, assess if there is an effect of disease severity on emotional well-being, and determine if emotional well-being is correlated with quality of life and depression. METHODS: A total of 153 HS subjects were recruited, and 66 Positive and Negative Affect

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Positive emotional well-being, health Behaviors, and inflammation measured by C-Reactive protein

OBJECTIVE: There is a substantial body of literature describing the association between inflammatory biomarkers and negative emotional factors (i.e. depression). However, less is known about how they might be related to positive psychological variables. This study examined the association between positive emotional well-being (PEWB) and C-Reactive Protein (CRP), an inflammatory biomarker important for cardiovascular and

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Psychological well-being revisited: advances in the science and practice of eudaimonia

This article reviews research and interventions that have grown up around a model of psychological well-being generated more than two decades ago to address neglected aspects of positive functioning such as purposeful engagement in life, realization of personal talents and capacities, and enlightened self-knowledge. The conceptual origins of this formulation are revisited and scientific products emerging from 6 thematic areas

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The prevalence of chronic health conditions impacting on daily functioning and the association with emotional well-being among a national sample of high school students

PURPOSE: This study aims to describe the prevalence of self-reported chronic health conditions among high school students in New Zealand, the extent to which the condition impacts on their activities and socialization, and to explore the association between the level of impact of the illness or disability and the emotional well-being of students with chronic health conditions. METHODS: A two-stage cluster sample of 9,107 students

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Emotional wellbeing in youth: A concept analysis

AIM: The aim of this concept analysis is to report a synthesis of the extant literature and define emotional wellbeing in youth as a concept of emerging importance. BACKGROUND: Emotional wellbeing is a national research priority in the United States. It is not well defined nor understood in the context of its ontology, mechanisms, biomarkers, or promotion. As a result, interventional research cannot be adequately informed.

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Relationships of diabetes-specific emotional distress, depression, anxiety, and overall well-being with HbA1c in adult persons with type 1 diabetes

OBJECTIVE: Emotional problems are common in adults with diabetes, and knowledge about how different indicators of emotional problems are related with glycemic control is required. The aim was to examine the relationships of diabetes-specific emotional distress, depression, anxiety, and overall well-being with glycosylated hemoglobin (HbA1c). METHODS: Of the 319 adults with type 1 diabetes attending the

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The Impact of Mindfulness-Based Stress Reduction on Emotional Wellbeing and Glycemic Control of Patients with Type 2 Diabetes Mellitus

OBJECTIVE: The aim of the study was to determine the effect of mindfulness-based stress reduction (MBSR) intervention on emotion regulation and glycemic control of patients with type 2 diabetes. MATERIALS AND METHODS: Sixty patients with type 2 diabetes were recruited for this randomized controlled trial from an outpatient clinic at Imam Hospital in Iran. The intervention group participated in 8 sessions of MBSR, and the

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Associations between positive emotional well-being and stress-induced myocardial ischemia: Well-being scores predict exercise-induced ischemia

OBJECTIVE: Depressive symptoms have been associated with myocardial ischemia induced by mental (MSIMI) and exercise (ESIMI) stress in clinically stable ischemic heart disease (IHD) patients, but the association between positive emotions and inducible ischemia is less well characterized. The objective of this study was to examine the associations between ratings of well-being and stress-induced ischemia. METHODS: Subjects

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Pain, sleep and emotional well-being explain the lack of agreement between physician- and patient-perceived remission in early rheumatoid arthritis

BACKGROUND: Clinical response and remission are defined in multiple ways and measured with different instruments, resulting in substantial variation of the proportion of patients classified as being in remission. Therefore, the agreement between patient-perceived, physician-perceived remission and clinical response and remission definitions was determined in early rheumatoid arthritis (RA) patients. And secondly,

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Psychological Well-Being and Family Environment of Siblings of Children with Life Threatening Illness

BACKGROUND: The psychological well-being of siblings of children with life threatening illness remains largely uncharted. Pediatric cancer research suggests that a supportive family environment may protect the psychological well-being of siblings. OBJECTIVE: We hypothesized that (1) siblings of pediatric palliative care patients would show clinical/behavioral scores that were elevated but that rates of serious psychopathology

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Changes in social support predict emotional well-being in breast cancer survivors

BACKGROUND: Breast cancer survivors who have completed surgery and adjuvant treatment have distinct social support needs that may relate to emotional health. There is little research on both levels of social support following treatment and the association between social support and emotional well-being over time following breast cancer diagnosis and treatment. The aims of this study were to assess (1) the direction and

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Impact of androgen deprivation therapy on mental and emotional well-being in men with prostate cancer: analysis from the CaPSURE™ registry

PURPOSE: While androgen deprivation therapy can delay cancer progression and reduce tumor burden, its use can be limited by adverse side effects. We evaluated the effect of androgen deprivation therapy on mental and emotional well-being in men with nonmetastatic prostate cancer. MATERIALS AND METHODS: Participants were enrolled in the national CaPSURE (Cancer of the Prostate Strategic Urologic Research Endeavor) registry,

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Association Between Subjective Well-being and Living Longer Without Disability or Illness

IMPORTANCE: Subjective well-being is associated with reduced mortality, but it is not clear whether additional time is spent in good health or with chronic disease and disability. OBJECTIVE: To evaluate the associations between affective well-being, total life expectancy, and life expectancy free of disability and chronic disease. DESIGN, SETTING, AND PARTICIPANTS: This survey study used data on 9761 participants from the English

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Subjective wellbeing, health, and ageing

Subjective wellbeing and health are closely linked to age. Three aspects of subjective wellbeing can be distinguished-evaluative wellbeing (or life satisfaction), hedonic wellbeing (feelings of happiness, sadness, anger, stress, and pain), and eudemonic wellbeing (sense of purpose and meaning in life). We review recent advances in the specialty of psychological wellbeing, and present new analyses about the pattern of wellbeing

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Setting the stage for universal financial distress screening in routine cancer care

Financial burden from cancer treatment is increasingly being recognized as a threat to optimal access, quality, and outcomes of cancer care for patients. Although research in the area is moving at a fast pace, multiple questions remain unanswered, such as how to practically integrate the assessment and management of financial burden into routine health care delivery for patients with cancer. Although psychological distress

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Annual Out-of-Pocket Expenditures and Financial Hardship Among Cancer Survivors Aged 18-64 Years – United States, 2011-2016

In the United States in 2019, an estimated 16.9 million persons are living after receiving a cancer diagnosis (1). These cancer survivors face many challenges, including functional limitations, serious psychological distress (2), and other lasting and late effects of cancer treatments. Because of the high cost of cancer therapy, many cancer survivors are more likely to face substantial out-of-pocket health care expenditures and financial

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Determinants and Consequences of Financial Hardship Among Adult Survivors of Childhood Cancer: A Report From the St. Jude Lifetime Cohort Study

BACKGROUND: Financial hardship among survivors of pediatric cancer has been understudied. We investigated determinants and consequences of financial hardship among adult survivors of childhood cancer. METHODS: Financial hardship, determinants, and consequences were examined in 2811 long-term survivors (mean age at evaluation = 31.8 years, years postdiagnosis = 23.6) through the baseline survey and clinical

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Medical financial hardship reported by Native Hawaiian and Pacific Islander cancer survivors compared with non-Hispanic whites

BACKGROUND: Although medical financial hardship (MFH) resulting from sequelae of cancer and treatment has been reported in other racial/ethnic populations, little is known about MFH among Native Hawaiian and Pacific Islander (NHPI) cancer survivors. METHODS: One hundred fifty adult NHPI cancer survivors were identified from the 2014 NHPI National Health Interview Survey (NHIS). Cancer survivors were those with a

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Gender differences in the association between modifiable risk factors and financial hardship among middle-aged and older adults

OBJECTIVE: To identify associations between modifiable risk factors (cigarette smoking, alcohol consumption, and obesity) and financial hardship (difficulty paying bills, food insecurity and medication need) among middle-aged and older Americans in a nationally representative sample. METHODS: This was a cross-sectional study of 8212 persons age 50 years and older who completed the core 2010 Health and Retirement Study

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Financial Support Models: A Case for Use of Financial Navigators in the Oncology Setting

BACKGROUND: Financial toxicity causes significant psychological and practical distress for patients and can affect their ability and willingness to undertake optimal treatment. Although different models of financial support are typically available to patients undergoing cancer treatments, not all models can offer equal amounts of support and effective solutions, particularly to those patients at the highest levels of risk for this

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Extensive financial hardship among gynecologic cancer patients starting a new line of therapy

OBJECTIVE: Our objective was to evaluate the three domains of financial hardship (psychological response, material conditions, and coping behaviors) among gynecologic cancer patients receiving treatment. METHODS: We conducted a single-institution survey of gynecologic cancer patients starting a new line of therapy for primary or recurrent disease. Psychological response was measured using Comprehensive Score

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Financial hardship among rural cancer survivors: An analysis of the Medical Expenditure Panel Survey

Some cancer survivors report spending 20% of their annual income on medical care. Undue financial burden that patients face related to the cost of care is referred to as financial hardship, which may be more prevalent among rural cancer survivors. This study examined contrasts in financial hardship among 1419 rural and urban cancer survivors using the 2011 Medical Expenditure Panel Survey supplement – The Effects of Cancer and Its

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Financial Vulnerability: A Case Study Involving a Patient With Head and Neck Cancer

BACKGROUND: Patients with head and neck cancer (HNC) face unique financial challenges. Even with stable income and health insurance, many patients become overwhelmed with direct and indirect treatment-associated costs. OBJECTIVES: This article discusses how prolonged financial burden in patients with cancer can result in compromised patient outcomes. METHODS: A case study is presented that highlights financial

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The financial burden and distress of patients with cancer: Understanding and stepping-up action on the financial toxicity of cancer treatment

Financial toxicity has now become a familiar term used in the discussion of cancer drugs, and it is gaining traction in the literature given the high price of newer classes of therapies. However, as a phenomenon in the contemporary treatment and care of people with cancer, financial toxicity is not fully understood, with the discussion on mitigation mainly geared toward interventions at the health system level. Although important,

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Financial burden of colorectal cancer treatment among patients and their families in a middle-income country

BACKGROUND: In Malaysia, the healthcare system consists of a government-run universal healthcare system and a co-existing private healthcare system. However, with high and ever rising healthcare spending on cancer management, cancer patients and their families are likely to become vulnerable to a healthcare-related financial burden. Moreover, they may have to reduce their working hours and lose income. To better

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Outpatient treatment costs and their potential impact on cancer care

Cancer creates a tremendous financial burden. Cancer-related costs are categorized into direct, indirect, and psychosocial costs. Although there have been many reports on medical care costs, which are direct, those on other costs are extremely scarce. We estimated travel time and costs required for cancer patients to receive outpatient treatment. We studied 521 cancer patients receiving anti-cancer treatment between February 2009

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Methods for measuring financial toxicity after cancer diagnosis and treatment: a systematic review and its implications

Patients experiencing financial distress as a side-effect of cancer are not only reported in the United States, but also in third-party payer healthcare systems in Europe. Since validated survey instruments are a prerequisite for robust and comparable results, we aimed to compile and classify available instruments to enable both a better understanding of the underlying construct of financial toxicity and to facilitate further

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Financial Hardship and the Economic Effect of Childhood Cancer Survivorship

In addition to the long-term physical and psychological sequelae of cancer therapy, adult survivors of childhood cancer are at an elevated risk for financial hardship. Financial hardship can have material, psychological, and behavioral effects, including high out-of-pocket medical costs, asset depletion and debt, limitations in or inability to work, job lock, elevated stress and worry, and a delaying or forgoing of medical care

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Understanding the Financial Needs Following Diagnosis of Breast Cancer in a Setting with Universal Health Coverage

BACKGROUND: A diagnosis of cancer negatively impacts the financial wellbeing of affected individuals as well as their households. We aimed to gain an in-depth understanding of the financial needs following diagnosis of breast cancer in a middle-income setting with universal health coverage. MATERIALS AND METHODS: Twelve focus group discussions (n = 64) were conducted with women with breast cancer from two public and three

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Financial Toxicity After Cancer in a Setting With Universal Health Coverage: A Call for Urgent Action

BACKGROUND: Financial toxicity negatively affects the well-being of cancer survivors. We examined the incidence, cost drivers, and factors associated with financial toxicity after cancer in an upper-middle-income country with universal health coverage. METHODS: Through the Association of Southeast Asian Nations Costs in Oncology study, 1,294 newly diagnosed patients with cancer (Ministry of Health [MOH] hospitals [n = 577]

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Financial Hardships Experienced by Cancer Survivors: A Systematic Review

BACKGROUND: With rising cancer care costs, including high-priced cancer drugs, financial hardship is increasingly documented among cancer survivors in the United States; research findings have not been synthesized. METHODS: We conducted a systematic review of articles published between 1990 and 2015 describing the financial hardship experienced by cancer survivors using PubMed, Embase, Scopus, and

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Sociodemographic Characteristics, Financial Worries and Serious Psychological Distress in U.S. Adults

Economic recessions have been well studied in relationship to poor mental health. However, subjective financial worries have not been examined relative to serious psychological distress (SPD), a measure of poor mental health. Adults 18 to 64 years in the cross-sectional 2016 National Health Interview Survey (n = 24,126) were examined for worries about paying for bills, serious medical events, expected medical costs, retirement,

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Economic and Humanistic Burden of Cervical Cancer in the United States: Results from a Nationally Representative Survey

Objective: To measure the economic and humanistic burden of cervical cancer in the United States. Materials and Methods: This was a retrospective analysis of Medical Expenditure Panel Survey data (2006-2015). Cervical cancer cases were identified using International Classification of Diseases, Ninth Revision, Clinical Modification code “180” or clinical classification software code “26”. The control group included women

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Economic hardship over twenty-two consecutive years of adult life and markers of early ageing: physical capability, cognitive function and inflammation

This study assesses the associations between annual measures of economic hardship (EH) across 22 years of adulthood and objective measures of early ageing in a Danish late-middle-aged population (N = 5575). EH (years < 60% of the National median equivalized household disposable income) was experienced by 18% during 1987-2008. Four or more years in EH (reference = null years in EH) was related to poorer physical

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Population-based assessment of cancer survivors’ financial burden and quality of life: a prospective cohort study

PURPOSE: The impact of financial burden among patients with cancer has not yet been measured in a way that accounts for inter-relationships between quality of life, perceived quality of care, disease status, and sociodemographic characteristics. PATIENTS AND METHODS: In a national, prospective, observational, population- and health care systems-based cohort study, patients with colorectal or lung cancer were enrolled

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The Longitudinal Influence of Social Determinants of Health on Glycemic Control in Elderly Adults With Diabetes

OBJECTIVE: This study aimed to understand the longitudinal relationship between financial, psychosocial, and neighborhood social determinants and glycemic control (HbA(1c)) in older adults with diabetes. RESEARCH DESIGN AND METHODS: Data from 2,662 individuals with self-reported diabetes who participated in the Health and Retirement Study (HRS) were used. Participants were followed from 2006 through 2014. Financial

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Financial Impact of Colorectal Cancer and Its Consequences: Associations Between Cancer-Related Financial Stress and Strain and Health-Related Quality of Life

BACKGROUND: The financial impact and consequences of cancer on the lives of survivors remain poorly understood. This is especially true for colorectal cancer. OBJECTIVE: We investigated objective cancer-related financial stress, subjective cancer-related financial strain, and their association with health-related quality of life in colorectal cancer survivors. DESIGN: This was a cross-sectional postal survey. SETTINGS: The study

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Association of Financial Strain With Symptom Burden and Quality of Life for Patients With Lung or Colorectal Cancer

PURPOSE: To measure the association between patient financial strain and symptom burden and quality of life (QOL) for patients with new diagnoses of lung or colorectal cancer. PATIENTS AND METHODS: Patients participating in the Cancer Care Outcomes Research and Surveillance study were interviewed about their financial reserves, QOL, and symptom burden at 4 months of diagnosis and, for survivors, at 12 months of

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Impact of financial burden of cancer on survivors’ quality of life

PURPOSE: Little is known about the relationship between the financial burden of cancer and the physical and emotional health of cancer survivors. We examined the association between financial problems caused by cancer and reported quality of life in a population-based sample of patients with cancer. METHODS: Data from the 2010 National Health Interview Survey (NHIS) were analyzed. A multivariable regression model was used to

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Financial Distress and Its Associations With Physical and Emotional Symptoms and Quality of Life Among Advanced Cancer Patients

OBJECTIVE: There are limited data on the effects of financial distress (FD) on overall suffering and quality of life (QOL) of patients with advanced cancer (AdCa). In this cross-sectional study, we examined the frequency of FD and its correlates in AdCa. PATIENTS AND METHODS: We interviewed 149 patients, 77 at a comprehensive cancer center (CCC) and 72 at a general public hospital (GPH). AdCa completed a self-rated

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Psychobehavioral risk factors for financial hardship and poor functional outcomes in survivors of multiple primary cancers

OBJECTIVE: Survivors of multiple primary cancers (MPC) are at increased risk for poor health outcomes compared with survivors of single cancers. Using an adapted psychobehavioral stress-response model, the study purpose was to identify pathways and individual risk factors associated with poor health outcomes in adults with MPC. METHODS: Adult MPC survivors (N = 211) with first cancers (stages I-III) diagnosed within

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Health Insurance Literacy and Financial Hardship in Women Living With Metastatic Breast Cancer

PURPOSE: In patients with metastatic breast cancer (MBC), low health insurance literacy may be associated with adverse material conditions, psychological response, and coping behaviors because of financial hardship (FH). This study explored the relationship between health insurance literacy and FH in women with MBC. METHODS: This cross-sectional study used data collected from 84 women receiving MBC treatment at 2

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Psychological factors associated with financial hardship and mental health: A systematic review

A review of the literature investigating the role of psychological factors in the relationship between financial hardship and mental health was completed. The review sought to identify which factors have been most consistently and reliably indicated, and the mechanisms by which these factors are proposed to contribute to the association between hardship and mental health. Although the review identified that a broad variety of

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Prevalence and Correlates of Medical Financial Hardship in the USA

BACKGROUND: High patient out-of-pocket (OOP) spending for medical care is associated with medical debt, distress about household finances, and forgoing medical care because of cost in the USA. OBJECTIVE: To examine the national prevalence of medical financial hardship domains: (1) material conditions from increased OOP expenses (e.g., medical debt), (2) psychological responses (e.g., distress), and (3) coping behaviors

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Financial toxicity in cancer care: Prevalence, causes, consequences, and reduction strategies

Financial toxicity is the adverse impact of a cancer diagnosis on a patient’s financial well-being resulting from direct or indirect costs. Potential consequences of financial toxicity include material loss, psychological distress, and/or maladaptive coping strategies. This review will summarize the prevalence, causes, and consequences of financial toxicity, with an emphasis on strategies to anticipate and reduce its burden.

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Financial difficulty, worry about affording care, and benefit finding in long-term survivors of cancer

OBJECTIVE: To examine the associations of worry about affording care and reporting financial difficulties with benefit finding in long-term cancer survivors. METHODS: Long-term survivors of cancer (n = 547) in 3 integrated health care delivery systems completed the Medical Expenditure Panel Survey Cancer Survivorship Supplement. The relationship between benefit finding (becoming a stronger person, coping better, and making

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The experience of financial stress among emerging adult cancer survivors

Objective: The experience of cancer-related financial stress was examined within the developmental context of emerging adulthood.Methodological approach: This study is a secondary analysis of data drawn from two samples of testicular or hematologic cancer survivors. In-depth interviews from 52 emerging adult (EA) cancer survivors, ages 18-29, were coded by combining thematic analysis with an abductive approach.

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Financial hardship among individuals with serious mental illness

This study explored financial hardship, defined as difficulty in obtaining food, shelter, or medicine in the past 12 months and its personal and clinical correlates in individuals with serious mental illness (SMI) in a sample of 271 adults with SMI newly admitted to two inner city community mental health centers. The study found that 59 percent (n = 161) reported experiencing financial hardship in the past 12 months. Patients with financial

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Medical Financial Hardship Intensity and Financial Sacrifice Associated with Cancer in the United States

BACKGROUND: With rising costs of cancer care, this study aims to estimate the prevalence of, and factors associated with, medical financial hardship intensity and financial sacrifices due to cancer in the United States. METHODS: We identified 963 cancer survivors from the 2016 Medical Expenditures Panel Survey – Experiences with Cancer. Medical financial hardship due to cancer was measured in material (e.g., filed for

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The Personal Financial Burden Associated with Musculoskeletal Trauma

BACKGROUND: Little is known about the effect of orthopaedic trauma on the financial health of patients. We hypothesized that some patients who sustain musculoskeletal trauma experience considerable financial hardship during treatment, and we also assessed for factors associated with increased personal financial burden. METHODS: We surveyed 236 of 393 consecutive patients who were approached at 1 of 2 American

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Within-Person Associations Between Financial Hardship and Cognitive Performance in the PATH Through Life Study

The aim of this study was to investigate the within-person associations between the experience of financial hardship and cognitive performance throughout adulthood. Three waves of data provided by 6,343 participants (49% men) were analyzed from a representative community-based sample from Canberra, Australia (2003-2015). The outcome was a composite measure reflecting fluid cognitive abilities. Financial

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Pre-diagnosis employment status and financial circumstances predict cancer-related financial stress and strain among breast and prostate cancer survivors

PURPOSE: Cancer may have a significant financial impact on patients, but the characteristics that predispose patients to cancer-related financial hardship are poorly understood. We investigated factors associated with cancer-related financial stress and strain in breast and prostate cancer survivors in Ireland, which has a complex mixed public-private healthcare system. METHODS: Postal questionnaires were distributed to 1373

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Associations between cancer-related financial stress and strain and psychological well-being among individuals living with cancer

BACKGROUND: Cancer places a financial and economic burden on individuals, but relatively little is known about the consequences. We investigated associations between cancer-related financial stress and strain and psychological well-being. METHODS: Individuals >6 months post-diagnosis with breast, prostate and lung cancer, identified from the National Cancer Registry Ireland, completed a postal questionnaire. Financial stress

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The patient-level effect of the cost of Cancer care – financial burden in German Cancer patients

BACKGROUND: Financial toxicity of cancer has so far been discussed primarily in the US health care system and is associated with higher morbidity and mortality. In European health care systems, the socio-economic impact of cancer is poorly understood. This study investigates the financial burden and patient-reported outcomes of neuroendocrine (NET) or colorectal (CRC) cancer patients at a German Comprehensive Cancer

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The patient-level effect of the cost of Cancer care – financial burden in German Cancer patients

BACKGROUND: Financial toxicity of cancer has so far been discussed primarily in the US health care system and is associated with higher morbidity and mortality. In European health care systems, the socio-economic impact of cancer is poorly understood. This study investigates the financial burden and patient-reported outcomes of neuroendocrine (NET) or colorectal (CRC) cancer patients at a German Comprehensive Cancer

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Relationships Among Financial Distress, Emotional Distress, and Overall Distress in Insured Patients With Cancer

PURPOSE: Recent studies have demonstrated increasing rates of financial toxicities and emotional distress related to cancer treatment. This study assessed and characterized the relationships among financial distress, emotional symptoms, and overall distress in patients with cancer. METHODS: A cross-sectional sample of patients with cancer who visited our outpatient medical oncology and psychiatry clinics completed a pen-and-

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Self-reported financial burden of cancer care and its effect on physical and mental health-related quality of life among US cancer survivors

BACKGROUND: Cancer-related financial burden has been linked to cancer survivors (CS) forgoing/delaying medical care, skipping follow-up visits, and discontinuing medications. To the authors’ knowledge, little is known regarding the effect of financial burden on the health-related quality of life of CS. METHODS: The authors analyzed 2011 Medical Expenditure Panel Survey data. Financial burden was present if one of the

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Cancer-Related Debt and Mental-Health-Related Quality of Life among Rural Cancer Survivors: Do Family/Friend Informal Caregiver Networks Moderate the Relationship?

Social connectedness generally buffers the effects of stressors on quality of life. Is this the case for cancer-related debt among rural cancer survivors? Drawing on a sample of 135 rural cancer survivors, we leverage family/friend informal caregiver network data to determine if informal cancer caregivers buffer or exacerbate the effect of cancer-related debt on mental-health-related quality of life (MHQOL). Using data from the Illinois

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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

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Financial burden of thyroid cancer in the United States: An estimate of economic and psychological hardship among thyroid cancer survivors

BACKGROUND: Annual cancer-related healthcare expenditure in the United States is estimated to exceed $150 billion by 2020. As the prevalence of thyroid cancer increases worldwide, thyroid cancer survivorship is associated with increasing personal and cumulative costs. Few studies have examined the psychological and material economic costs experienced by thyroid cancer survivors. We seek to estimate the comparative

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The perceived cancer-related financial hardship among patients and their families: a systematic review

PURPOSE: The escalating health-care spending for cancer management has caused cancer patients to struggle further as a result of financial burden. This systematic review was carried out to investigate the prevalence of perceived financial hardship and associated factors among cancer patients and their families. METHODS: A systematic search for studies concerning the perception of financial burden among cancer

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The buffering effect of tangible social support on financial stress: influence on psychological well-being and psychosomatic symptoms in a large sample of the adult general population

INTRODUCTION: Financial stress is an important source of distress and is related to poor mental and physical health outcomes. The present study investigated whether tangible social support could buffer the effect of financial stress on psychological and psychosomatic health. METHODS: Two separate postal surveys were sent to random samples in five counties in Sweden in 2004 and 2008, with a total of 84 263 respondents. The

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Exploring socioeconomic and mental health trajectories during times of economic recession: a qualitative study with primary health care users and professionals

Background: The 2008 economic recession has been shown to affect populations’ mental health due to deterioration of socioeconomic and living conditions. Concurrently, mental health problems may have constituted a vulnerability to wider social inequalities during this period. Aims: To explore perceptions and experiences of primary health care users and professionals regarding the relationship between mental health

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Relationship between paid leave, financial burden, and patient-reported outcomes among employed patients who have undergone bone marrow transplantation

PURPOSE: The US does not have universal paid family and medical leave. We examine the direct effects of access to paid leave on patient-reported health, quality of life (QOL), and perceived stress of employed patients who underwent bone marrow transplantation (BMT) to treat advanced blood cancer as well as the indirect effects through reductions in the financial burden (FB) that patients face. METHODS: Our cross-

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Cancer survivors’ experiences with insurance, finances, and employment: results from a multisite study

BACKGROUND: Cancer has significant implications on survivors’ insurance coverage, financial status, and employment. We aimed to examine how these outcomes vary for survivors of different cancer types. METHODS: Using the Cancer Survivorship Supplement of the Medical Expenditures Panel Survey (MEPS), in 2013, we surveyed survivors of five common cancers who were diagnosed during 2003-2008 and were

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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-

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Financial burden and quality of life among thyroid cancer survivors

BACKGROUND: Survivors of cancer in the United States are often financially encumbered by expenses and lost wages from cancer treatment. The majority of patients with thyroid cancer are diagnosed before age 65, when they are not eligible for Medicare. We hypothesized that financial distress would be common among thyroid cancer survivors and would be associated with poor health-related quality of life. METHODS: A

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Economic instability and household chaos relate to cortisol for children in poverty

The present study investigated relations among various aspects of economic adversity and cortisol levels for young children facing economic hardship. Specifically, the study examined relations to cortisol for variables representing family income, material hardship, financial strain, economic instability, and household chaos. Participants were 374 children, ages 3-5 years, who attended a Head Start preschool, as well as their primary

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Cancer-related financial hardship among head and neck cancer survivors: Risk factors and associations with health-related quality of life

OBJECTIVE: Cancer survivors are susceptible to financial hardship. In head and neck cancer (HNC) survivors, we investigated (a) predictors for cancer-related financial hardship and (b) associations between financial hardship and health-related quality of life (HRQoL). METHODS: We conducted a cross-sectional study in HNC survivors identified from the National Cancer Registry Ireland. HRQoL was based on the Functional

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The association of financial difficulties and out-of-pocket payments with health-related quality of life among breast, prostate and colorectal cancer patients

Objectives: Financial difficulties experienced by cancer patients may affect their health-related quality of life (HRQoL). This study assessed the direct economic burden that out-of-pocket (OOP) payments cause and explored how they and financial difficulties are associated with HRQoL. Methods: This is a cross-sectional registry and survey study of 1978 cancer patients having either prostate (630), breast (840) or colorectal

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Objective and subjective financial burden and its associations with health-related quality of life among lung cancer patients

PURPOSE: The purpose of this study is to examine the effect of financial burden, using objective and subjective indicators, on the health-related quality of life (HRQOL) in lung cancer patients. METHOD: A total of 227 patients diagnosed with lung cancer (from the inpatient unit of the department of internal medicine-chest oncology, in Shanghai Chest Hospital, China) participated in the study. Financial information was measured by

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Assessment of Financial Toxicity Among Older Adults With Advanced Cancer

IMPORTANCE: Financial toxicity (FT), unintended and unanticipated financial burden experienced by cancer patients undergoing cancer care, is associated with negative consequences and increased risk of mortality. Older patients (≥70 years) with cancer are at risk for FT, yet data are limited on FT and whether oncologists discuss FT with their patients. OBJECTIVE: To examine the prevalence of FT in older adults with advanced

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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

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As if the disease was not enough: coping with the financial consequences of cancer

PURPOSE: The goal of this research was to understand how cancer survivors cope with the financial consequences of their disease. METHODS: Twenty-six cancer survivors who self-identified as having experienced financial hardship related to their disease were interviewed. Transcripts of these interviews were analyzed using constructivist grounded theory approach. An analysis of codes related to coping strategies

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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

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Financial Hardship and Quality of Life among African American and White Cancer Survivors: The Role of Limiting Care Due to Cost

BACKGROUND: Financial hardship is common among cancer survivors and is associated with both limiting care due to cost and with poor health-related quality of life (HRQOL). This study estimates the association between limiting care due to cost and HRQOL in a diverse population of cancer survivors and tests whether limiting care mediates the association between financial hardship and HRQOL. METHODS: We used data from

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Financial Hardship, Motivation to Quit and Post-Quit Spending Plans Among Low-Income Smokers Enrolled in a Smoking Cessation Trial

BACKGROUND: Tobacco spending may exacerbate financial hardship in low-income populations by using funds that could go toward essentials. This study examined post-quit spending plans among low-income smokers and whether financial hardship was positively associated with motivation to quit in the sample. METHODS: We analyzed data from the baseline survey of a randomized controlled trial testing novel a smoking

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The Contribution of Social Support, Professional Support, and Financial Hardship to Family Caregiver Life Satisfaction After Traumatic Brain Injury

OBJECTIVES: (a) To assess whether 3 changeable environmental variables (social support, professional support, and financial hardship) contribute to explaining differences in well-being of family caregivers after traumatic brain injury (TBI), above and beyond the influence of neurobehavioral functioning. (b) To assess the unique and relative contribution of social support, professional support, and financial hardship to life

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Mechanisms of life-course socioeconomic inequalities in adult systemic inflammation: Findings from two cohort studies

Disadvantaged socioeconomic conditions in childhood heighten systemic inflammatory levels in adulthood; however, life-course mechanisms underlying this association are largely unknown. In the present observational study, we investigated the roles of adulthood socioeconomic and lifestyle factors in mediating this association. Participants were from two prospective Swiss population-based cohorts (N = 5,152, mean age 60 years). We

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You Have to Keep a Roof Over Your Head: A Qualitative Study of Housing Needs Among Patients With Cancer in New York City

PURPOSE: Housing status can become compromised in the wake of financial hardship for some patients with cancer and become a source of disparity. This qualitative study describes the types of housing issues experienced by patients with cancer and survivors of cancer in New York City. METHODS: Semistructured interviews were conducted with a volunteer sample of 21 patients with cancer or survivors of cancer treated in

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Long-Term Economic and Employment Outcomes Among Partners of Women With Early-Stage Breast Cancer

PURPOSE: Work loss is one of many personal costs for patients with cancer and their families. Many women with breast cancer face long-term job loss that stems from their diagnoses. However, little is known about the economic and employment outcomes of partners of women with breast cancer. METHODS: Women with nonmetastatic breast cancer identified by the Detroit and Los Angeles SEER registries between June 2005 and

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