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1.
Lancet Glob Health ; 12(9): e1534-e1543, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39151988

RESUMO

BACKGROUND: Alzheimer's disease and other dementias (ADODs) severely threaten the wellbeing of older people, their families, and communities, especially with projected exponential growth. Understanding the macroeconomic implications of ADODs for policy making is essential but under-researched. METHODS: We used a health-augmented macroeconomic model to calculate the macroeconomic burden of ADODs for 152 countries or territories, accounting for: the effect on labour supply of reduced working hours of informal caregivers; the effect on labour supply of ADODs-related mortality and morbidity; age-sex-specific differences in education, work experience, labour market participations, and informal caregivers; and treatment and formal care costs diverting from savings and investments. FINDINGS: ADODs will cost the world economy 14 513 billion international dollars (INT$, measured in the base year 2020; 95% uncertainty interval [UI] 12 106-17 778) from 2020 to 2050, equivalent to 0·421% (95% UI 0·351-0·515) of annual global GDP. Japan incurs the largest annual GDP loss at 1·463% (1·225-1·790). China (INT$2961 billion [2507-3564]), the USA (INT$2331 billion [1989-2829]), and Japan (INT$1758 billion [1471-2150]) face the largest absolute economic burdens. The economic burden of informal care ranges from 60·97% in high-income countries to 85·45% in lower-middle-income countries, and treatment and formal care costs range from 10·50% in lower-middle-income countries to 30·80% in high-income countries. INTERPRETATION: The macroeconomic burden of ADODs is substantial and unequally distributed across countries and regions. Global efforts to reduce the burden, especially with regard to informal care, are urgently needed. FUNDING: National Institute on Aging, National Institutes of Health; Chinese Academy of Engineering; Chinese Academy of Medical Sciences; Bill & Melinda Gates Foundation; Davos Alzheimer's Collaborative through Data for Decisions.


Assuntos
Doença de Alzheimer , Efeitos Psicossociais da Doença , Demência , Saúde Global , Humanos , Doença de Alzheimer/economia , Doença de Alzheimer/epidemiologia , Demência/economia , Demência/epidemiologia , Demência/terapia , Cuidadores/economia , Feminino , Masculino , Idoso
2.
BMJ Open Respir Res ; 11(1)2024 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-39122474

RESUMO

BACKGROUND: Cost of illness studies are important tools to summarise the burden of disease for individuals, the healthcare system and society. The lack of standardised methods for reporting costs for cystic fibrosis (CF) makes it difficult to quantify the total socioeconomic burden. In this study, we aimed to comprehensively report the socioeconomic burden of CF in Canada. METHODS: The total cost of CF in Canada was calculated by triangulating information from three sources (Canadian CF Registry, customised Burden of Disease survey and publicly available information). A prevalence-based, bottom-up, human capital approach was applied, and costs were categorised into four perspectives (ie, healthcare system, individual/caregiver, variable (ie, medicines) and society) and three domains (ie, direct, indirect and intangible). All costs were converted into 2021 Canadian dollars (CAD) and adjusted for inflation. The cost of cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies was excluded. RESULTS: The total socioeconomic burden of CF in Canada in 2021 across the four perspectives was $C414 million. Direct costs accounted for two-thirds of the total costs, with medications comprising half of all direct costs. Out-of-pocket costs to individuals and caregivers represented 18.7% of all direct costs. Indirect costs representing absenteeism accounted for one-third of the total cost. CONCLUSION: This comprehensive cost of illness study for CF represents a community-oriented approach describing the socioeconomic burden of living with CF and serves as a benchmark for future studies.


Assuntos
Efeitos Psicossociais da Doença , Fibrose Cística , Custos de Cuidados de Saúde , Humanos , Fibrose Cística/economia , Fibrose Cística/terapia , Fibrose Cística/epidemiologia , Canadá/epidemiologia , Feminino , Masculino , Adulto , Custos de Cuidados de Saúde/estatística & dados numéricos , Adolescente , Adulto Jovem , Criança , Gastos em Saúde/estatística & dados numéricos , Pré-Escolar , Cuidadores/economia , Fatores Socioeconômicos , Lactente , Absenteísmo , Prevalência , Pessoa de Meia-Idade , Sistema de Registros
3.
BMC Prim Care ; 25(1): 317, 2024 Aug 28.
Artigo em Inglês | MEDLINE | ID: mdl-39198724

RESUMO

BACKGROUND: The caregiving scholarship widely acknowledges informal caregivers' contributions to maintaining older adults' health and well-being. However, informal caregivers encounter economic, physical, social, financial and psychological challenges when caring for older adults. The caregiving literature has shown variations in caregiving intensity and motivation between rural and urban informal caregivers of older adults. This situation is likely to result in rural-urban disparities in caregiver burden. However, the literature on predictors of caregiver burden is more focused on demographic, socio-economic, caregiving and health-related factors with very little attention to geographical dynamics. For this reason, the effects of demographic, socio-economic, caregiving, and health-related factors on the variations in caregiver burden between rural and urban informal caregivers of older adults are yet to be known in the sub-Saharan African context, including Ghana. Notably, the impact of geographical location on caregiver burden is mainly missing in the informal caregiving literature in Ghana. Situated within the stress process model, we determine the association between geographical location and caregiver burden among informal caregivers of older adults in Ghana. METHODS: This study employed data from a large cross-sectional survey on informal caregiving, health, and healthcare among caregivers of older adults aged 50 years or above (N = 1,853) in Ghana. We selected the World Health Organization Impact of Caregiving Scale to measure caregiver burden. Generalized multivariable linear regression models were employed to determine the association between geographical location and caregiver burden among informal caregivers of older adults. We reported beta values and standard errors with significance levels of 0.05 or less. RESULTS: The results showed that rural informal caregivers of older adults significantly have a decreased caregiver burden compared to urban informal caregivers (ß = -1.64; SE = 0.41). Also, participants across all the self-rated health categories (poor/very poor: ß = 12.63; SE = 1.65; fair: ß = 9.56; SE = 1.07; good: ß = 11.00; SE = 0.61, very good: ß = 7.03; SE = 0.49) have a significantly increased caregiver burden for the full sample and for both rural (poor/very poor: ß = 13.88; SE = 2.4; fair: ß = 6.11; SE = 1.62; good: ß = 9.97; SE = 0.96, very good: ß = 6.06; SE = 0.71) and urban (poor/very poor: ß = 11.86; SE = 2.25; fair: ß = 12.33; SE = 1.42; good: ß = 11.80; SE = 0.79, very good: ß = 7.90; SE = 0.67) participants. This study further revealed that participants with no financial support needs reported a decreased caregiver burden compared to those with financial support needs for the full sample (ß = -2.92, p-value < 0.01) and for both rural (ß = -3.20; p-value < 0.01) and urban (ß =-2.70; p-value < 0.01) participants. CONCLUSION: The findings from this study underscore geographical location differences in caregiver burden among informal caregivers of older adults in Ghana. Given these findings, the need to consider geographical location variations in providing welfare and health support programs to lessen caregiver burden among informal caregivers of older adults is welcomed. In line with the stress process model, such welfare and health programs should consider background, context, and stressor factors that contribute to variations in caregiver burden between rural and urban informal caregivers of older adults in Ghana and other sub-Saharan African countries.


Assuntos
Sobrecarga do Cuidador , Cuidadores , População Rural , População Urbana , Humanos , Gana , Masculino , Feminino , Pessoa de Meia-Idade , População Rural/estatística & dados numéricos , População Urbana/estatística & dados numéricos , Idoso , Estudos Transversais , Sobrecarga do Cuidador/psicologia , Cuidadores/psicologia , Cuidadores/economia , Cuidadores/estatística & dados numéricos , Fatores Socioeconômicos , Nível de Saúde
4.
Cad Saude Publica ; 40(6): e00120223, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39082561

RESUMO

In Mexico, the economically active population aged over 50 years has been increasing in recent years. Due to their age, these workers may experience health deterioration and require some form of care. However, only formal employment is associated with better access to health services and pensions. At the same time, these workers may also need to care for children, sick partners or dependent older adults, which limits their time available for employment. This study examined the association between disability, receiving and providing care and access to health services, and economic activity among adults aged 50 to 69 in Mexico in 2015 and 2018. Multilevel modeling was conducted using data from the Mexican Health and Aging Study (MHAS). The MHAS is a longitudinal panel study of adults aged 50 years and older. The study sample included data from 8,831 observations from 2015 and 10,445 observations from 2018. Those living with some degree of disability and receiving care were found to be less likely to be economically active than those living with disability and not receiving care. Similarly, individuals who care for someone were also found to be less likely to be employed. Furthermore, the data suggested that individuals without access to health services were more likely to be economically active. For individuals aged 50 to 69 years, health and care issues were factors that limited economic activity status. In family-oriented societies with weak welfare states, the right to health is partial for the population and care is traditionally the responsibility of women, which exacerbates gender inequalities and has a differential impact on paid work for men and women.


Assuntos
Cuidadores , Pessoas com Deficiência , Acessibilidade aos Serviços de Saúde , Fatores Socioeconômicos , Humanos , México , Masculino , Feminino , Idoso , Pessoa de Meia-Idade , Pessoas com Deficiência/estatística & dados numéricos , Cuidadores/economia , Cuidadores/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/economia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Estudos Longitudinais , Emprego/estatística & dados numéricos , Nível de Saúde , Fatores Sociodemográficos
5.
JCO Glob Oncol ; 10: e2300397, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-39052946

RESUMO

PURPOSE: The rising cost of cancer treatment causes out-of-pocket spending among patients or caregivers in lower-middle-income countries, resulting in acute misery and insolvency. This study aimed to assess the financial toxicity associated with cancer treatment and the coping strategies for cancer treatment adopted among the caregivers of patients with cancer in a tertiary cancer care center. MATERIALS AND METHODS: This prospective cross-sectional study was conducted among the primary caregivers of patients with cancer undergoing curative treatment from March to June 2023. The estimated sample size was 403 caregivers. The financial toxicity was assessed using a modified Comprehensive Score for Financial Toxicity-Functional Assessment of Chronic Illness Therapy tool, and coping strategies were explored using a validated questionnaire of 20 questions. Univariate and multivariate analyses investigated the associations and factors influencing financial toxicity. RESULTS: The caregivers recruited in the study were 403; 83.8% were younger than 50 years, and 66.5% were male. The common cancer types included were breast cancer (27.3%), GI cancer (17.9%), head and neck cancer (12.4%), and gynecological cancer (11.6%). The mean financial toxicity score was 22.32 (standard deviation, 9.55), with 64% experiencing moderate to severe financial toxicity. The most common coping strategies used were spending a portion or all of the savings, borrowing money from others, restructuring their spending habits, seeking financial assistance from the cancer center, and resorting to gold loans. CONCLUSION: Screening patients and their primary caregivers using a modified COST tool can help identify families experiencing severe financial toxicity and provide necessary intervention.


Assuntos
Adaptação Psicológica , Cuidadores , Neoplasias , Humanos , Feminino , Masculino , Neoplasias/psicologia , Neoplasias/economia , Neoplasias/terapia , Cuidadores/psicologia , Cuidadores/economia , Cuidadores/estatística & dados numéricos , Estudos Transversais , Pessoa de Meia-Idade , Estudos Prospectivos , Adulto , Efeitos Psicossociais da Doença , Países em Desenvolvimento , Gastos em Saúde/estatística & dados numéricos , Inquéritos e Questionários , Idoso , Capacidades de Enfrentamento
7.
BMC Health Serv Res ; 24(1): 796, 2024 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-38987739

RESUMO

BACKGROUND: Informal care plays an essential role in managing the COVID-19 pandemic. Expanding health insurance packages that reimburse caregivers' services through cost-sharing policies could increase financial resources. Predicting payers' willingness to contribute financially accurately is essential for implementing such a policy. This study aimed to identify the key variables related to WTP/WTA of COVID-19 patients for informal care in Sanandaj city, Iran. METHODS: This cross-sectional study involved 425 COVID-19 patients in Sanandaj city, Iran, and 23 potential risk factors. We compared the performance of three classifiers based on total accuracy, specificity, sensitivity, negative likelihood ratio, and positive likelihood ratio. RESULTS: Findings showed that the average total accuracy of all models was over 70%. Random trees had the most incredible total accuracy for both patient WTA and patient WTP(0.95 and 0.92). Also, the most significant specificity (0.93 and 0.94), sensitivity (0.91 and 0.87), and the lowest negative likelihood ratio (0.193 and 0.19) belonged to this model. According to the random tree model, the most critical factor in patient WTA were patient difficulty in personal activities, dependency on the caregiver, number of caregivers, patient employment, and education, caregiver employment and patient hospitalization history. Also, for WTP were history of COVID-19 death of patient's relatives, and patient employment status. CONCLUSION: Implementing of a more flexible work schedule, encouraging employer to support employee to provide informal care, implementing educational programs to increase patients' efficacy, and providing accurate information could lead to increased patients' willingness to contribute and finally promote health outcomes in the population.


Assuntos
COVID-19 , Aprendizado de Máquina , Humanos , COVID-19/epidemiologia , Estudos Transversais , Masculino , Feminino , Irã (Geográfico) , Pessoa de Meia-Idade , Adulto , Cuidadores/psicologia , Cuidadores/economia , Financiamento Pessoal , SARS-CoV-2 , Participação do Paciente , Idoso
8.
Front Public Health ; 12: 1324334, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39022422

RESUMO

Introduction: Breast cancer is among the most frequently diagnosed cancers worldwide, with 2.3 million new cases reported annually. The condition causes a social and economic impact known as financial toxicity of cancer. The study aims to explore the extra expenses borne by patients and their families on being diagnosed with breast cancer. Methodology: An observational, descriptive, cross-sectional study was conducted. The data was collected between November 2021 and March 2022 at the Medical Oncology Service in Complejo Asistencial Universitario de Salamanca, Spain. The variables under investigation were additional economic costs, physical disability (as measured by the Barthel Index), instrumental activities of daily living (as measured by the Lawton-Brody Scale), and caregiver burden (measured using the ZARIT scale). Results: The final sample size was N = 107. The study yielded the following outcomes: the median age was 55 years old and the majority of participants were female, with a proportion of 99.1%. The incidence rates for stage I and II were 31.8 and 35.5%, respectively. The median Barthel score was 100 points, while the Lawton and Brody score were 8 points and the ECOG score was 2 points. The analysis of primary caregiver burden resulted in a median ZARIT score of 15 points. The expenses related solely to the cancer diagnosis totaled 1511.22 euros per year (316.82 euros for pharmaceuticals; 487.85 euros for orthopedic equipment; 140.19 euros for home help; and 566.36 euros for housing adaptation or transfer to a hospital). The average annual income before diagnosis was 19962.62 euros. However, after being diagnosed with breast cancer, there is a significant income decrease of 15.91%, resulting in a reduced average annual income of 16785.98 euros. Additionally, a significant correlation was found between total expenditure and the level of dependency (p = 0.032) and functional status (p = 0.045). Conclusion: These findings indicate that breast cancer patients experience a considerable economic burden, which worsens as their functional status deteriorates. Therefore, we believe policies should be implemented to help control this economic deterioration resulting from a serious health condition.


Assuntos
Atividades Cotidianas , Neoplasias da Mama , Efeitos Psicossociais da Doença , Humanos , Feminino , Pessoa de Meia-Idade , Estudos Transversais , Neoplasias da Mama/economia , Espanha , Idoso , Adulto , Masculino , Cuidadores/economia , Cuidadores/estatística & dados numéricos
9.
Cancer Med ; 13(11): e7366, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38872395

RESUMO

BACKGROUND: Patients with metastatic cancer experience high healthcare use and costs, most of which are unplanned. We aimed to assess whether patients with more competent informal caregivers have lower unplanned healthcare use and costs. METHODS: This study used data from a prospective cohort of patients with solid metastatic cancer. Patients and their informal family caregivers were surveyed every 3 months until patients' death. Patients' unplanned healthcare use/costs were examined through hospital records. Caregivers responded to the 4-item Caregiver Competence Scale. First, in a deceased subsample of patients and their caregivers, we used patients' last 2 years of data (226 dyads) to assess the association between caregivers' competency (independent variable) and patients' unplanned healthcare use/costs (outcomes). Next, in a prospective sample of patient-caregiver dyads (up to 15 surveys), we assessed whether patients' functional well-being and psychological distress moderated the association between caregivers' competency and unplanned healthcare use/costs (311 dyads). RESULTS: In the deceased subsample, during last 2 years of patients' life, caregivers' higher competency lowered the odds of patients' unplanned healthcare use [OR (CI) = 0.86 (0.75, 0.98), p = 0.03], and was associated with a significant reduction in unplanned healthcare costs [Coeff (CI) = -0.19 (-0.36, -0.01), p = 0.03]. In the prospective sample, patients' functional well-being and psychological distress moderated the association between caregivers' competency and patients' unplanned healthcare use/costs. CONCLUSION: With deterioration in patients' condition and an increase in caregiving demands, improving caregivers' competency can reduce patients' unplanned healthcare use and costs. This should be further tested in future trials.


Assuntos
Cuidadores , Custos de Cuidados de Saúde , Neoplasias , Humanos , Cuidadores/psicologia , Cuidadores/economia , Feminino , Masculino , Neoplasias/terapia , Neoplasias/economia , Pessoa de Meia-Idade , Estudos Prospectivos , Idoso , Aceitação pelo Paciente de Cuidados de Saúde , Inquéritos e Questionários , Adulto
10.
J Alzheimers Dis ; 100(2): 563-578, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38875031

RESUMO

Background: Impact of Alzheimer's disease (AD) progression on patient health-related quality of life (HRQoL), caregiver time, and societal costs is not well characterized in early AD. Objective: To assess the association of change in cognition with HRQoL, caregiver time, and societal costs over 36 months, and estimate the impact of slowing disease progression on these outcomes. Methods: This post-hoc analysis included patients with amyloid-positive mild cognitive impairment (MCI) and mild AD dementia (MILD AD) from the 36-month GERAS-US study. Disease progression was assessed using the Mini-Mental State Examination score. Change in outcomes associated with slowing AD progression was estimated using coefficients from generalized linear models. Results: At baseline, 300 patients had MCI and 317 had MILD AD. Observed natural progression over 36 months was associated with: 5.1 point decline in the Bath Assessment of Subjective Quality of Life in Dementia (BASQID) score (for HRQoL), increase in 1,050 hours of total caregiver time, and $8,504 total societal costs for MCI; 6.6 point decline in the BASQID score, increase in 1,929 hours of total caregiver time, and $12,795 total societal costs for MILD AD per person. Slowing AD progression by 30% could result in per person savings in HRQoL decline, total caregiver time, and total societal costs: for MCI: 1.5 points, 315 hours, and $2,638; for MILD AD: 2.0 points, 579 hours, and $3,974. Conclusions: Slowing AD progression over 36 months could slow decline in HRQoL and save caregiver time and societal cost in patients with MCI and MILD AD.


Assuntos
Doença de Alzheimer , Cuidadores , Disfunção Cognitiva , Efeitos Psicossociais da Doença , Progressão da Doença , Qualidade de Vida , Humanos , Doença de Alzheimer/economia , Doença de Alzheimer/psicologia , Qualidade de Vida/psicologia , Masculino , Feminino , Cuidadores/psicologia , Cuidadores/economia , Idoso , Disfunção Cognitiva/economia , Disfunção Cognitiva/psicologia , Idoso de 80 Anos ou mais , Estados Unidos , Testes de Estado Mental e Demência
11.
Pharmacoeconomics ; 42(8): 865-877, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38874846

RESUMO

BACKGROUND: Productivity losses are often included in costing studies and economic evaluations to provide a comprehensive understanding of the economic burden of disease. Global guidance on estimating productivity losses is sparse, especially for low-and middle-income countries (LMICs) where informal and unpaid work remains dominant. This study aims to describe current practices for valuing productivity losses in LMICs. METHODS: We performed a systematic review of studies published before April 2022 using three databases, including PubMed, Cochrane Library and Web of Science Core Collection. We included any costing or economic evaluation study conducted in a LMIC that provided methodological details on how the monetary value for productivity losses was estimated. Two reviewers independently screened articles for inclusion, extracted data and assessed the quality of the studies. RESULTS: A total of 281 articles were included. While most studies did not specify the overall approach used to measure and value productivity losses (58%), the human capital approach was the most frequently used approach to measure productivity losses when this was clearly stated (39%). The most common methods to estimate a monetary value for productivity losses were market wages (51%), self-reported wages (28%) and macroeconomic measures (15%). CONCLUSION: Reporting standards for productivity losses in LMIC settings have room for improvement. While market wages were the most frequently used method to estimate the monetary value of productivity losses, this relies on context-specific data availability. Until a consensus is reached on if, when and how to include productivity losses in costing and economic evaluation studies, future studies could include a sensitivity analysis to explore the impact of different methods for estimating the monetary value of productivity losses.


Assuntos
Efeitos Psicossociais da Doença , Países em Desenvolvimento , Eficiência , Humanos , Cuidadores/economia , Salários e Benefícios
12.
Value Health ; 27(9): 1251-1260, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38871025

RESUMO

OBJECTIVES: Informal care represents a significant cost driver in dementia but monetizing informal care hours to inform cost-of-illness or economic evaluation studies remains a challenge. This study aimed to use a discrete choice experiment to estimate the value of informal care time provided to people with dementia in Australia accounting for positive and negative impacts of caregiving. METHODS: Attributes and levels were derived from a literature review, interviews with carers, and advice received from an advisory group. Attributes included 4 positive and negative caregiving experiences, in addition to "hours of care provided" and the "monetary compensation from the government." A D-efficient design was constructed with 2 generic alternatives that represented hypothetical informal caregiving situations. The discrete choice experiment survey was administered online to a representative sample of the Australian general population and a group of informal carers of people with dementia. The willingness to accept estimates were calculated for the 2 samples separately using the mixed logit model in the willingness to pay space. RESULTS: Based on 700 respondents included in the analysis (n = 488 general public, n = 212 informal carers), the mean willingness to accept for an additional hour of informal care, corrected for the positive and negative impacts of informal care, was $21 (95% CI 18-23) for the general public and $20 (95% CI 16-25) for the informal carers sample. CONCLUSION: The estimates generated in this study can be used to inform future cost-of-illness studies and economic evaluations, ensuring that informal care time is considered in future policy and funding decisions.


Assuntos
Cuidadores , Demência , Humanos , Demência/economia , Cuidadores/economia , Cuidadores/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Austrália , Idoso , Adulto , Efeitos Psicossociais da Doença , Comportamento de Escolha , Fatores de Tempo , Assistência ao Paciente/economia , Inquéritos e Questionários , Idoso de 80 Anos ou mais , Análise Custo-Benefício
13.
J Aging Health ; 36(9): 570-582, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-38887015

RESUMO

OBJECTIVE: To examine racial and ethnic differences in costs of informal caregiving among older adults with dementia in the United States. METHODS: We used data from the 2002 to 2018 Health and Retirement Survey to estimate annual informal care hours for adults with dementia (n = 10,015). We used regression models to examine racial and ethnic differences in hours of informal care for activities of daily living (ADL) and instrumental ADL, controlling for demographic characteristics, education, and level of disability. RESULTS: Our sample was 70% non-Hispanic White, 19% non-Hispanic Black, and 11% Hispanic. Hispanics received, on average, 35.8 hours of informal care each week, compared to 30.1 for Blacks and 20.1 for Whites. Racial and ethnic differences persisted when controlling for covariates. DISCUSSION: Informal care is a greater cost to racial and ethnic minoritized families. Informal care was valued at a replacement cost of $44,656 for Hispanics, $37,508 for Blacks, and $25,121 for Whites.


Assuntos
Negro ou Afro-Americano , Cuidadores , Demência , Hispânico ou Latino , População Branca , Humanos , Masculino , Feminino , Idoso , Demência/etnologia , Estados Unidos , Cuidadores/economia , Cuidadores/psicologia , Hispânico ou Latino/estatística & dados numéricos , Hispânico ou Latino/psicologia , População Branca/estatística & dados numéricos , Negro ou Afro-Americano/estatística & dados numéricos , Idoso de 80 Anos ou mais , Atividades Cotidianas , Pessoa de Meia-Idade , Etnicidade/estatística & dados numéricos
14.
Pediatr Nephrol ; 39(10): 3079-3093, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-38856776

RESUMO

BACKGROUND: Caregivers of children with chronic kidney disease (CKD) in low resource settings must provide complex medical care at home while being burdened by treatment costs often paid out-of-pocket. We hypothesize that caregiver burden in our low resource setting is greater than reported from high income countries and is associated with frequent catastrophic healthcare expenditure (CHE). METHODS: We conducted a mixed-methods study of primary caregivers of children with advanced CKD (stage 3b-5) in our private-sector referral hospital in a low resource setting. We assessed caregiver burden using the Pediatric Renal Caregiver Burden Scale (PRCBS) and measured financial burden by calculating the proportion of caregivers who experienced CHE (monthly out-of-pocket healthcare expenditure exceeding 10% of total household monthly expenditure). We performed a qualitative reflexive thematic analysis of caregiver interviews to explore sources of burden. RESULTS: Of the 45 caregivers included, 35 (78%) had children on maintenance dialysis (25 PD, 10 HD). Mean caregiver burden score was 141 (± 17), greater than previously reported. On comparative analysis, PRCBS scores were higher among caregivers of children with kidney failure (p = 0.005), recent hospitalization (p = 0.03), non-earning caregivers (p = 0.02), caring for > 2 dependents (p = 0.009), and with high medical expenditure (p = 0.006). CHE occurred in 43 (96%) caregivers of whom 37 (82%) paid out-of-pocket. The main themes derived relating to caregiver burden were severe financial burden, mental stress and isolation, and perpetual burden of concern. CONCLUSION: Parents of children with CKD experienced severe caregiver burden with frequent CHE and relentless financial stress indicating an imminent need for social support interventions.


Assuntos
Sobrecarga do Cuidador , Gastos em Saúde , Insuficiência Renal Crônica , Humanos , Masculino , Feminino , Gastos em Saúde/estatística & dados numéricos , Criança , Insuficiência Renal Crônica/economia , Insuficiência Renal Crônica/terapia , Insuficiência Renal Crônica/psicologia , Sobrecarga do Cuidador/psicologia , Sobrecarga do Cuidador/economia , Adolescente , Pré-Escolar , Efeitos Psicossociais da Doença , Adulto , Cuidadores/psicologia , Cuidadores/economia , Cuidadores/estatística & dados numéricos , Pessoa de Meia-Idade , Região de Recursos Limitados
15.
Palliat Med ; 38(7): 725-736, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38907630

RESUMO

INTRODUCTION: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. AIM: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. DESIGN: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. SETTING/PARTICIPANTS: Adult national survey respondents - England. RESULTS: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only. CONCLUSION: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.


Assuntos
Cuidadores , Assistência Terminal , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Cuidadores/economia , Cuidadores/psicologia , Assistência Terminal/economia , Adulto , Inglaterra , Idoso de 80 Anos ou mais , Família/psicologia , Amigos , Adolescente , Adulto Jovem , Custos de Cuidados de Saúde/estatística & dados numéricos , Efeitos Psicossociais da Doença , Inquéritos e Questionários
17.
J Health Econ ; 96: 102884, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38749331

RESUMO

We estimate a dynamic structural model of labor supply, retirement, and informal caregiving to study short and long-term costs of informal caregiving in Germany. Incorporating labor market frictions and the German tax and benefit system, we find that in the absence of Germany's public long-term insurance scheme, informal elderly care has adverse and persistent effects on labor market outcomes and, thus, negatively affects lifetime earnings and future pension benefits. These consequences of caregiving are heterogeneous and depend on age, previous earnings, and institutional regulations. Policy simulations suggest that while public long-term care insurance policies are fiscally costly and induce negative labor market effects, they can largely offset the personal costs of caregiving and increase welfare, especially for low-income individuals.


Assuntos
Seguro de Assistência de Longo Prazo , Humanos , Seguro de Assistência de Longo Prazo/economia , Alemanha , Idoso , Pessoa de Meia-Idade , Feminino , Masculino , Cuidadores/economia , Adulto , Aposentadoria/economia , Emprego/estatística & dados numéricos , Assistência de Longa Duração/economia , Idoso de 80 Anos ou mais
18.
J Am Geriatr Soc ; 72(8): 2523-2531, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38698643

RESUMO

BACKGROUND: Rural family caregivers (FCGs) in the United States often experience high economic costs. This randomized controlled trial compared a transitional palliative care intervention (TPC) to support FCGs of seriously ill care recipients (CRs) to an attention control condition. We evaluated the TPC's effect on healthcare use and out-of-pocket spending for both FCGs and CRs. METHODS: TPC FCGs received teaching, guidance, and counseling via video calls for 8 weeks following CR discharge from the hospital. After discharge, a research assistant called all FCGs once a month for up to 6 months or CR death to collect self-reported healthcare utilization (e.g., outpatient, emergency department, and hospital), out-of-pocket healthcare spending (e.g., deductibles and coinsurance), and health-related travel costs (e.g., transportation, lodging, food) for FCGs and CRs. Incidence rate ratios (IRRs) were estimated using negative binomial regressions. RESULTS: The study included 282 FCG-CR dyads across three U.S. states. Follow-up over the 6-month period was shortened by high CR mortality rates across both arms (29%), but was similar across arms. TPC reduced nights in the hospital for CR (IRR = 0.75; 95% confidence interval [CI] = 0.56-0. 99). Total out-of-pocket spending was not significantly different for TPC versus control. Across both groups, mean out-of-pocket spending for dyads was $1401.85, with healthcare payments contributing $1048.58 and transportation expenses contributing $136.79. TPC dyads reported lower lodging costs (IRR = 0.71; 95% CI = 0.56-0.89). CONCLUSIONS: This study contributes to evidence that palliative care interventions reduce the number of nights in the hospital for seriously ill patients. Yet, overall rural FCGs and seriously ill CRs experience substantial out-of-pocket economic costs in the 6 months following hospitalization. Transitional care intervention design should consider impacts on patient and caregiver spending. CLINICALTRIALS: gov # is NCT03339271.


Assuntos
Cuidadores , Gastos em Saúde , Cuidados Paliativos , População Rural , Humanos , Masculino , Cuidadores/economia , Feminino , Gastos em Saúde/estatística & dados numéricos , Idoso , Estados Unidos , Cuidados Paliativos/economia , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos
19.
J Health Serv Res Policy ; 29(4): 248-256, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-38713011

RESUMO

OBJECTIVE: Since 2016, the Chinese government has been piloting a public long-term care insurance (LTCI) scheme. This study examined whether the LTCI scheme reduced the use of informal care and how this has varied across income groups. METHOD: We used data from the 2011, 2014, and 2018 waves of Chinese Longitudinal Healthy Longevity Survey, focusing on community-dwelling older adults aged 65 years and older. We used staggered difference-in-differences analyses with propensity score matching to examine the effects of the policy. RESULTS: The LTCI scheme reduced the probability and intensity of informal care use by 5.7% (p < .05) and 17.4% (p < .05), respectively. The policy impact was limited to older people in the middle-income group, reducing the probability and intensity of informal care use by 15.6% (p < .001) and 43.1% (p < .05), respectively. We did not find a statistically significant policy effect for older adults with high or low incomes. CONCLUSIONS: The LTCI scheme had different effects on reducing the informal care burden for family caregivers by income level. We suggest that the scheme should entitle people with low incomes to a preferential co-payment rate, thereby enhancing their access to formal care.


Assuntos
Renda , Seguro de Assistência de Longo Prazo , Humanos , Idoso , Masculino , China , Feminino , Seguro de Assistência de Longo Prazo/economia , Seguro de Assistência de Longo Prazo/estatística & dados numéricos , Renda/estatística & dados numéricos , Idoso de 80 Anos ou mais , Cuidadores/economia , Estudos Longitudinais , Política de Saúde
20.
PLoS One ; 19(5): e0299974, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38781177

RESUMO

Rapid population aging has been placing heavy tolls on Chinese family caregivers. Previous empirical evidence from multiple countries have shown that establishing national long-term care insurance was effective in reducing family care burdens. Utilizing data from the China Health and Retirement Longitudinal Study (CHARLS) wave 2011 to 2018, this study examined the effects of implementing the pilot long-term care insurance program on family care received by the Chinese older adults, by using a time-varying Difference-in-Differences (DID) method. The results showed that: (1) the implementation of the pilot long-term care insurance program has led to a 17.2% decline in general for family care received by the Chinese older adults. (2) The effect of participating in the pilot program on family care received differed by respondent's household registration, health status, marital status, and possesion of retirement pension, and were specifically pronounced among those who were urban residents, having spouse, living with disabilities, and living with no retirement pension. (3) Further results from the mechanism analyses showed that the pilot long-term care insurance program decreased the level of family care by reducing the dual intergenerational financial support between older adults and their adult children. (4) Although participating in the pilot program decreased older adult's dependence on their adult children, their physical and mental health status were not negatively affected. This study contributes to the existing literature by evaluating the effects of implementing the pilot long-term care insurance program on family care received by the Chinese older adults, and lends supports to the previous studies that participating in long-term care insurance significantly reduces old adults' demand for family care, but not in sacrifice of their physical and mental well-being.


Assuntos
Cuidadores , Seguro de Assistência de Longo Prazo , Humanos , Idoso , Seguro de Assistência de Longo Prazo/economia , Masculino , Feminino , Cuidadores/economia , Cuidadores/psicologia , Pessoa de Meia-Idade , Estudos Longitudinais , China , Idoso de 80 Anos ou mais , Projetos Piloto , Aposentadoria/economia , Relação entre Gerações , Filhos Adultos/psicologia , Assistência de Longa Duração/economia , Família
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