Financial burden among US households affected by cancer at the end of life.
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ABSTRACT:
SUBMITTER: Cagle JG
PROVIDER: S-EPMC4956573 | biostudies-literature | 2016 Aug
REPOSITORIES: biostudies-literature
Publications
Financial burden among US households affected by cancer at the end of life.
Cagle John G JG Carr Dawn C DC Hong Seokho S Zimmerman Sheryl S
Psycho-oncology 20150817 8
<h4>Objective</h4>Economic burden on families coping with end-stage cancer remains poorly understood. Advanced malignancy threatens financial stability of families, and interventions are needed to buffer them from impoverishment. This study examined the relationship between subjective and objective assessments of financial burden on families (financial strain and stress, respectively) and identified potentially modifiable factors to inform intervention efforts.<h4>Methods</h4>Using national surv ...[more]
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Project description:BackgroundThe rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life.MethodsA cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009-31 December 2010). Sudden deaths were excluded.ResultsWe studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P < 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P < 0.001). Patients <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs.ConclusionIn all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed.
| S-EPMC4168044 | biostudies-literature
Project description:IntroductionHead and neck cancer (HNC) is the seventh most common cancer worldwide. Treatment may be associated with the inability to work and substantial out-of-pocket expenses. However, to date, there is little research synthesising quantitative evidence on the financial burden experienced by people affected by HNCs, including family members and informal carers. The purpose of this systematic review is to estimate out-of-pocket costs, reduced or lost income and informal care costs associated with HNC, identify categories of financial burden and investigate which costs predominate when considering financial burden in this population.Methods and analysisA comprehensive search of peer-reviewed literature will be conducted for articles published from 01/01/2010 to 19/03/2021 (CINAHL, Cochrane library, EconLit, Embase, Medline Complete). Published, English-language articles describing primary and secondary research directly related to the topic and quantitative cost data will be included. One researcher will complete the searches and screen results for potentially eligible studies. Three other researchers will independently screen the titles and abstracts of a subset of 30% citations, that is, 10% each. Full text articles will be independently screened by three reviewers. Any disagreement will be resolved by consensus among the team. Study and patient characteristics, cost categories and financial burden will be independently extracted by one reviewer and checked by a second. Methodological quality will be evaluated independently by two reviewers. Descriptive analyses will be undertaken and a narrative summary of the included studies will be provided.Ethics and disseminationEthics approval is not required to conduct this research because this is a planned systematic review of published literature. Findings will be presented at leading cancer and health economic conferences, published in a peer-reviewed journal and disseminated via website postings and social media channels.Systematic review registration numberCRD42021252929.
| S-EPMC8883271 | biostudies-literature
Project description:ContextAnticholinergic drugs can cause several side effects, impairing cognition and quality of life (QOL). Cancer patients are often exposed to increasing cumulative anticholinergic load (ACL) as they approach death, but this burden has not been examined in patients with nonmalignant diseases.ObjectivesTo determine ACL and its impact in noncancer versus cancer palliative care patients.MethodsWe performed a secondary analysis of 244 subjects enrolled in a randomized controlled trial. ACL was quantified with the Anticholinergic Drug Scale. We used multivariable regression to calculate the effect of ACL on key outcomes, including drowsiness, fatigue, and QOL. Patients were stratified by diagnosis, and drugs were grouped as symptom management (SM) or disease management (DM).ResultsOverall, ACL in cancer and noncancer patients was not significantly different (2.6 vs. 2.4; P = 0.23). SM drugs caused greater anticholinergic exposure than DM drugs in both cancer and noncancer patients (2.3 vs. 0.5, and 1.5 vs. 1.3, respectively; both P < 0.05); however, DM drugs exposed noncancer patients to relatively more ACL than cancer patients (1.2 vs. 0.6, P < 0.0001). ACL was associated with worse fatigue (odds ratio, 1.08; CI, 1.002-1.17) and worse QOL (odds ratio, 0.89; CI, 0.80-0.98).ConclusionsACL is associated with worse fatigue and QOL and may not differ significantly between cancer and noncancer patients nearing end of life. SM drugs are more responsible for ACL in cancer and noncancer patients, although DM drugs contribute significantly to ACL in the latter group. We recommend more attention to reducing anticholinergic use in all patients with life-limiting illness.
| S-EPMC5472041 | biostudies-literature
Project description:BackgroundOne of the three main targets of the World Health Organization (WHO) End TB Strategy (2015-2035) is that no tuberculosis (TB) patients or their households face catastrophic costs (defined as exceeding 20% of the annual household income) because of the disease. Our study seeks to determine, as a baseline, the magnitude and main drivers of the costs associated with TB disease for patients and their households and to monitor the proportion of households experiencing catastrophic costs in Brazil.MethodsA national cross-sectional cluster-based survey was conducted in Brazil in 2019-2021 following WHO methodology. TB patients of all ages and types of TB were eligible for the survey. Adult TB patients and guardians of minors (<18 years old) were interviewed once about costs, time loss, coping measures, income, household expenses, and asset ownership. Total costs, including indirect costs measured as reported household income change, were expressed as a percentage of annual household income. We used descriptive statistics to analyze the cost drivers and multivariate logistic regression to determine factors associated with catastrophic costs.ResultsWe interviewed 603 patients, including 538 (89%) with drug-sensitive (DS) and 65 (11%) with drug-resistant (DR) TB. Of 603 affected households, 48.1% (95%CI: 43-53.2) experienced costs above 20% of their annual household income during their TB episode. The proportion was 44.4% and 78.5% among patients with DS- and DR-TB, respectively. On average, patients incurred costs of US$1573 (95%CI: 1361.8-1785.0) per TB episode, including pre-diagnosis and post-diagnosis expenses. Key cost drivers were post-diagnosis nutritional supplements (US$317.6, 95%CI: 232.7-402.6) followed by medical costs (US$85.5, 95%CI: 54.3-116.5) and costs of travel for clinic visits during treatment (US$79.2, 95%CI: 61.9-96.5). In multivariate analysis, predictors of catastrophic costs included positive HIV status (aOR = 3.0, 95%CI:1.1-8.6) and self-employment (aOR = 2.7, 95%CI:1.1-6.5); high education was a protective factor (aOR = 0.1, 95%CI:0.0-0.9).ConclusionsAlthough the services offered to patients with TB are free of charge in the Brazilian public health sector, the availability of free diagnosis and treatment services does not alleviate patients' financial burden related to accessing TB care. The study allowed us to identify the costs incurred by patients and suggest actions to mitigate their suffering. In addition, this study established a baseline for monitoring catastrophic costs and fostering a national policy to reduce the costs to patients for TB care in Brazil.
| S-EPMC10718450 | biostudies-literature
Project description:BackgroundAlthough tuberculosis (TB) care is free in Tanzania, TB-associated costs may compromise access to services and treatment adherence resulting in poor outcomes and increased risk of transmission in the community. TB can impact economically patients and their households. We assessed the economic burden of TB on patients and their households in Tanzania and identified cost drivers to inform policies and programs for potential interventions to mitigate costs.MethodsWe conducted a nationally representative cross-sectional survey using a standard methodology recommended by World Health Organization. TB patients of all ages and with all types of TB from 30 clusters across Tanzania were interviewed during July - September 2019. We used the human capital approach to assess the indirect costs and a threshold of 20% of the household annual expenditure to determine the proportion of TB-affected households experiencing catastrophic cost. We descriptively analyzed the cost data and fitted multivariable logistic regression models to identify potential predictors of catastrophic costs.ResultsOf the 777 TB-affected households, 44.9% faced catastrophic costs due to TB. This proportion was higher (80.0%) among households of patients with multi-drug resistant TB (MDR-TB). Overall, cost was driven by income loss while accessing TB services (33.7%), nutritional supplements (32.6%), and medical costs (15.1%). Most income loss was associated with hospitalization and time for picking up TB drugs. Most TB patients (85.9%) reported worsening financial situations due to TB, and over fifty percent (53.0%) borrowed money or sold assets to finance TB treatment. In multivariable analysis, the factors associated with catastrophic costs included hospitalization (adjusted odds ratio [aOR] = 34.9; 95% confidence interval (CI):12.5-146.17), living in semi-urban (aOR = 1.6; 95% CI:1.0-2.5) or rural areas (aOR = 2.6; 95% CI:1.8-3.7), having MDR-TB (aOR = 3.4; 95% CI:1.2-10.9), and facility-based directly-observed treatment (DOT) (aOR = 7.2; 95% CI:2.4-26.6).ConclusionWe found that the cost of TB care is catastrophic for almost half of the TB-affected households in Tanzania; our findings support the results from other surveys recently conducted in sub-Saharan Africa. Collaborative efforts across health, employment and social welfare sectors are imperative to minimize household costs due to TB disease and improve access to care, patient adherence and outcomes.
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Project description:BackgroundTuberculosis (TB) patients incur large costs for care seeking, diagnosis, and treatment. To understand the magnitude of this financial burden and its main cost drivers, the Lao People's Democratic Republic (PDR) National TB Programme carried out the first national TB patient cost survey in 2018-2019.MethodA facility-based cross-sectional survey was conducted based on a nationally representative sample of TB patients from public health facilities across 12 provinces. A total of 848 TB patients including 30 drug resistant (DR)-TB and 123 TB-HIV coinfected patients were interviewed using a standardised questionnaire developed by the World Health Organization. Information on direct medical, direct non-medical and indirect costs, as well as coping mechanisms was collected. We estimated the percentage of TB-affected households facing catastrophic costs, which was defined as total TB-related costs accounting for more than 20% of annual household income.ResultThe median total cost of TB care was US$ 755 (Interquartile range 351-1,454). The costs were driven by direct non-medical costs (46.6%) and income loss (37.6%). Nutritional supplements accounted for 74.7% of direct non-medical costs. Half of the patients used savings, borrowed money or sold household assets to cope with TB. The proportion of unemployment more than doubled from 16.8% to 35.4% during the TB episode, especially among those working in the informal sector. Of all participants, 62.6% of TB-affected households faced catastrophic costs. This proportion was higher among households with DR-TB (86.7%) and TB-HIV coinfected patients (81.1%).ConclusionIn Lao PDR, TB patients and their households faced a substantial financial burden due to TB, despite the availability of free TB services in public health facilities. As direct non-medical and indirect costs were major cost drivers, providing free TB services is not enough to ease this financial burden. Expansion of existing social protection schemes to accommodate the needs of TB patients is necessary.
| S-EPMC7660466 | biostudies-literature
Project description:BackgroundThe World Health Organization's End Tuberculosis Strategy states that no tuberculosis (TB)-affected households should endure catastrophic costs due to TB. To achieve this target, it is essential to provide adequate social protection. As only a few studies in many countries have evaluated social-protection programs to determine whether the target is being reached, we assessed the effect of financial support on reducing the incidence of catastrophic costs due to TB in Indonesia.MethodsFrom July to September 2016, we interviewed adult patients receiving treatment for TB in 19 primary health centres in urban, sub-urban and rural area of Indonesia, and those receiving multidrug-resistant (MDR) TB treatment in an Indonesian national referral hospital. Based on the needs assessment, we developed eight scenarios for financial support. We assessed the effect of each simulated scenario by measuring reductions in the incidence of catastrophic costs.ResultsWe analysed data of 282 TB and 64 MDR-TB patients. The incidences of catastrophic costs in affected households were 36 and 83%, respectively. Patients' primary needs for social protection were financial support to cover costs related to income loss, transportation, and food supplements. The optimum scenario, in which financial support would be provided for these three items, would reduce the respective incidences of catastrophic costs in TB and MDR-TB-affected households to 11 and 23%. The patients experiencing catastrophic costs in this scenario would, however, have to pay high remaining costs (median of USD 910; [interquartile range (IQR) 662] in the TB group, and USD 2613; [IQR 3442] in the MDR-TB group).ConclusionsIndonesia's current level of social protection is not sufficient to mitigate the socioeconomic impact of TB. Financial support for income loss, transportation costs, and food-supplement costs will substantially reduce the incidence of catastrophic costs, but financial support alone will not be sufficient to achieve the target of 0% TB-affected households facing catastrophic costs. This would require innovative social-protection policies and higher levels of domestic and external funding.
| S-EPMC6359783 | biostudies-literature
Project description:There is considerable evidence that family psycho-education combined with pharmacological intervention for patients with schizophrenia increases family understanding of the illness, reduces the familial burden of care, and improves patient outcomes. However, no studies have determined whether the burden of care is greater for those families with more than one ill member (multiplex) than for families with a single-affected individual (simplex), and whether psycho-educational programs should be adapted to meet the specific needs of multiplex families. This study was conducted at a tertiary care postgraduate teaching hospital in New Delhi, India. Caregivers in simplex [n = 50] and multiplex families [n = 30] were compared with regard to levels of burden, coping, and the impact of psycho-education on family functioning. All the caregiver participants attended eight bimonthly, psycho-educational intervention sessions. They were assessed on the Burden Assessment Schedule (BAS) and the Coping Check List (CCL) before and after psycho-education. Caregivers from the multiplex families reported significantly more burden on two domains of the BAS, but there were no significant differences between the groups with regard to coping on the CCL. Following psycho-education, significant improvement occurred in the majority of domains of the BAS and the CCL; the effect sizes varied by domain and family type. Multiplex families face a greater burden of care compared with simplex families. Currently, available psycho-education programs are moderately effective for such families.
| S-EPMC5810971 | biostudies-literature
Project description:BackgroundNodding syndrome (NS), is an unexplained form of epilepsy which leads to stunted growth, cognitive decline, and a characteristic nodding of the head. Current data about its impact on households in Uganda is scarce. Therefore, this study aims to assess the economic burden of the persistent morbidity of NS on caregivers in affected households in Northern Uganda.MethodsA cross-sectional cost-of-care study was conducted from January 2019 to February 2019 in Lakwela village-Northern Uganda in 14 households, who are members of a community-based organization (CBO) established in the village with the support of a Japanese research team, (Uganda-Japan Nodding Syndrome Network). Data was collected through questionnaires. Both direct (medical and non-medical) and indirect (informal care) costs of caregiving were assessed. Indirect costs were valued using the human-capital method as loss of production.ResultsDirect costs constituted a higher proportion of costs for NS households, accounting for on average 7.7% of household expenditure. The annual weighted mean cost per NS patient was estimated at 27.6 USD (26.4 USD direct costs, 96.2% and 1.2 USD indirect cost, 3.8%). Average time spent on informal caregiving was 4.4 ±1.7 (standard deviation) hours/week with an estimated annual informal caregiving cost of 24.85 USD and gross domestic product (GDP) loss of 412.40 USD.ConclusionDirect costs due to NS are still high among households in this study. More studies are needed to investigate measures that could help bring down these costs and equally reduce the day-to-day disruption of caregiver's activities; consequently, improving the lives of these affected households and communities.
| S-EPMC7523991 | biostudies-literature
Project description:Health care-related costs and satisfaction are compelling targets for quality improvement in cancer care delivery; however, little is known about how financial burden affects patient satisfaction.This was an observational, cross-sectional, survey-based study assessing patient-reported financial burden (FB). Eligible patients were ? 21 years with solid tumor malignancy and were receiving chemotherapy or hormonal therapy for ? 1 month. The Patient Satisfaction Questionnaire Short-Form assessed patient satisfaction with health care. Subjective FB related to cancer treatment was measured on a 5-point Likert scale.Of 174 participants (32% response rate), 47% reported significant/catastrophic FB. Participants reported highest satisfaction with interpersonal manner and lowest satisfaction with financial aspects of care. In adjusted analysis, high FB was negatively associated with general satisfaction (coefficient: -.29), satisfaction with technical quality (coefficient: -.26), and satisfaction with financial aspects of care (coefficient: -.62). Older age was associated with higher scores in all satisfaction subscales except patient-physician communication and financial aspects. Annual household income of <$20,000 was associated with lower satisfaction scores in all subscales except time spent with doctor. High FB was not associated with patient satisfaction scores for accessibility and convenience, communication, interpersonal manner, or time spent with doctor.FB is a potentially modifiable correlate of poor satisfaction with cancer care including general satisfaction and satisfaction with the technical quality of care. Addressing cancer-associated FB may lead to improved satisfaction, which in turn can influence adherence, outcomes, and quality of life.
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