Health, dependency and caregiving: barriers to economic activity among individuals aged 50 to 69 years in Mexico.

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.

COVID-19 Economic and Academic Stress on Mexican American Adolescents' Psychological Distress: Parents as Essential Workers.

OBJECTIVES: In a sample of Mexican American adolescents (N = 398; 51% females; aged 13-17), we examined the associations between psychological distress, COVID-19 household economic stress, COVID-19 academic stress, and whether these associations varied by adolescents' gender and by parents/caregivers' essential worker status. METHOD: First, linear regression models assessed the main effects of household economic and academic stress on psychological distress. Second, the moderating effects of gender and parents/caregivers' essential worker status on the association between household economic and academic stress, and psychological distress were examined. Third, the three-way interaction effect of household economic stress, gender, and parents/caregivers' essential worker status on psychological distress as well as the three-way interaction effect of academic stress, gender, and parents/caregivers' essential worker status on psychological distress were calculated. RESULTS: Household economic and academic stress were associated with psychological distress. However, these associations did not vary based on adolescents' gender or parents/caregivers' essential worker status. The three-way interaction for household economic stress, parents/caregivers' essential worker status, and gender for psychological distress was significant. Specifically, the effects of household economic stress on psychological distress was worse for boys than girls whose parents/caregivers were essential workers. Furthermore, the three-way interaction among academic stress, parents/caregivers' essential worker status, and gender was significant. Particularly, the effects of academic stress when grades were worse on adolescents' psychological distress was worse for boys than girls whose parents/caregivers were essential workers. CONCLUSION: Parents/caregivers' essential worker status was salient among Mexican American adolescents' mental health outcomes during COVID-19, particularly for adolescent boys.

Making visible the cost of informal caregivers' time in Latin America: a case study for major cardiovascular, cancer and respiratory diseases in eight countries.

BACKGROUND: Informal care is a key element of health care and well-being for society, yet it is scarcely visible and rarely studied in health economic evaluations. This study aims to estimate the time use and cost associated with informal care for cardiovascular diseases, pneumonia and ten different cancers in eight Latin American countries (Argentina, Brazil, Chile, Colombia, Costa Rica, Ecuador, Mexico and Peru). METHODS: We carried out an exhaustive literature review on informal caregivers' time use, focusing on the selected diseases. We developed a survey for professional caregivers and conducted expert interviews to validate this data in the local context. We used an indirect estimate through the interpolation of the available data, for those cases in which we do not found reliable information. We used the proxy good method to estimate the monetary value of the use of time of informal care. National household surveys databases were processed to obtain the average wage per hour of a proxy of informal caregiver. Estimates were expressed in 2020 US dollars. RESULTS: The study estimated approximately 1,900 million hours of informal care annually and $ 4,300 million per year in average informal care time cost for these fifteen diseases and eight countries analyzed. Cardiovascular diseases accounted for an informal care burden that ranged from 374 to 555 h per year, while cancers varied from 512 to 1,825 h per year. The informal care time cost share on GDP varied from 0.26% (Mexico) to 1.38% (Brazil), with an average of 0.82% in the studied American countries. Informal care time cost represents between 16 and 44% of the total economic cost (direct medical and informal care cost) associated with health conditions. CONCLUSIONS: The study shows that there is a significant informal care economic burden -frequently overlooked- in different chronic and acute diseases in Latin American countries; and highlights the relevance of including the economic value of informal care in economic evaluations of healthcare.

Perspectiva econômica no cuidado intensivo neonatal: uma análise de custos hospitalares e para cuidadores de recém-nascidos / Economic perspective on neonatal intensive care: an analysis of hospital costs and caregivers of newborns

Em relação à demanda de recursos de saúde da atenção do RN e ao custo incorrido pelas famílias, esta dissertação se justifica por apresentar duas perspectivas de análise econômica: uma análise de custo direto sob a perspectiva do SUS provedor, através de uma estimativa de custos hospitalares do cuidado neonatal em uma UTIN selecionada em um hospital de referência nacional no município do Rio de Janeiro, e uma análise de custo indireto, sob a perspectiva das famílias, centrada no cuidador durante o período de internação nesta UTIN. O objeto desta pesquisa se centra na análise de custo do cuidado neonatal durante a internação do RN na UTIN, sob a perspectiva do SUS como provedor da atenção à saúde, e sob a perspectiva da família dos RN. Compreende-se, ainda, que os resultados obtidos nesta pesquisa poderão ser utilizados em estudos de avaliação econômica completos, além de incentivar pesquisas com a mesma temática, fortalecendo o conhecimento sobre as avaliações econômicas no campo do cuidado neonatal no Brasil. O custo direto evidenciou diferenças significativas em recém-nascidos com e sem malformações: a mediana do custo total foi 141% maior naqueles com malformação. O impacto na renda das famílias, abordadas neste estudo em virtude da internação de seus bebês na unidade neonatal, foi revelador ao demonstrar que, em pouco tempo de internação, um número expressivo de famílias experimentou gastos catastróficos: 69,4% das famílias (34 famílias), quando considerado o limiar de 10% da renda, e, para o limiar de 40%, 20,3% (10 famílias), e que esses gastos influenciaram diretamente, de forma negativa, na vivência desse processo, acendendo um sinal de alerta, pois uma parte desta população de RN não encerra sua demanda intensiva por cuidados assistenciais de saúde com a passagem pela unidade neonatal.

Regarding the demand for health care resources for the NB and the cost incurred by families, this dissertation is justified by presenting two perspectives of economic analysis: an analysis of direct cost from the perspective of the public health provider system, through an estimate of hospital costs of neonatal care in a neonatal unit, selected in a national reference hospital in the city of Rio de Janeiro, and an analysis of indirect cost from the perspective of families, centered on the caregiver during the period of hospitalization in this neonatal unit. This research focuses on the analysis of the cost of neonatal care during the hospitalization of newborns in the neonatal unit, from the perspective of the public health system as a provider of health care, and from the perspective of the newborn's family. It is also understood that the results obtained in this research can be used in complete economic evaluation studies, in addition to encouraging research on the same theme, strengthening knowledge about economic evaluations in the field of neonatal care in Brazil. The direct cost showed significant differences in newborns with and without malformations, the median total cost was 141% higher in those with malformations. The impact on the income of the families, addressed in this study due to the hospitalization of their babies in the neonatal unit, was revealing when demonstrating that, in a short period of hospitalization, a significant number of families experienced catastrophic expenses: 69.4% of the families (34 families), when considering the threshold of 10% of income, and for the threshold of 40%, 20.3% (10 families), and that these expenses had a direct negative influence in the experience of this process, lighting a warning signal because a part of this newborn population do not to end their intensive demand for health care with a visit to the neonatal unit.

Psychosocial and economic impact of rheumatic diseases on caregivers of Mexican children.

BACKGROUND: Pediatric rheumatic disease (PRD) patients and their caregivers face a number of challenges, including the consequences of the PRD in patients and the impact on multiple dimensions of the caregivers' daily lives. The objective of this study is to measure the economic, psychological and social impact that PRD has on the caregivers of Mexican children. METHODS: This is a multicenter, cross-sectional study including primary caregivers of children and adolescents with PRD (JIA, JDM and JSLE) during April and November, 2019. A trained interviewer conducted the CAREGIVERS questionnaire, a specific, 28-item multidimensional tool validated to measure the impact on different dimensions of the lives of caregivers. Sociodemographic, clinical, and healthcare system data were collected for further analysis. RESULTS: Two hundred participants were recruited (women 169, 84.5%, aged 38 [IQR 33-44] years); 109 (54.5%) cared for patients with JIA, 28 (14%) JDM and 63 (31.5%) JSLE. The healthcare system was found to be determinant on the impact of the disease. The emotional impact was higher in all the participants, regardless of the specific diagnoses. The social dimension showed significant differences regarding PRD, healthcare system, time to reach the center, presence of disability, active disease, cutaneous and systemic manifestations, treatment and partner. Financial and work impacts were more frequent in those caring for JSLE and less so in those with a partner. Family relationships changed in 81 caregivers (25 [12.5%] worsened and 56 [28%] improved). No variables affecting spirituality were found. For caregivers without a partner, the social networks impact increased. CONCLUSION: The influence of sociodemographic factors can be devastating on families with children with a PRD. These data will help physicians to identify the areas with the greatest need for intervention to achieve comprehensive care for caregivers and their patients.

Direct and Indirect Costs of Caring for Patients with Chronic Non-Communicable Diseases / Costos directos e indirectos derivados del cuidado familiar del paciente con enfermedad crónica no transmisible / Custos diretos e indiretos derivados do cuidado familiar do paciente com doença crônica não transmissível

ABSTRACT Objective: To determine direct and indirect non-medical costs derived from caring for patients with chronic non-communicable diseases (NCDs) in three health institutions located in the metropolitan area of Bucaramanga, Colombia. Methods: A descriptive cross-sectional study was conducted with 77 patients with NCDs and their family caregivers, who were selected through systematic sampling between 2018 and 2019. Results: Most people with NCDs are women (55 %) at an average age of 70. Four out of five caregivers are women, at an average age of 40, who deliver care for an average of 14 hours a day. The total monthly cost for patient care was on average 324,207 COP. The most significant costs are related to health, food, housing, transport, and communication. 60.5 % of NCDs patients were responsible for household finances before becoming ill. About half of them stopped working and the other half experienced a reduction of 33 % in their monthly income after becoming ill. Conclusion: Due to the need for complementary and comprehensive treatment, care, and interventions, costs related to care of NCDs patients increase despite the income of NCDs patients and their caregivers do not.

RESUMEN Objetivo: determinar los costos directos no aplicables a los servicios de salud e indirectos derivados del cuidado familiar del paciente con enfermedad crónica no transmisible (ECNT) de tres instituciones de salud del área metropolitana de Bucaramanga, Colombia. Metodología: estudio transversal descriptivo en 77 personas con ECNT y sus cuidadores familiares, seleccionados mediante muestreo sistemático entre 2018 y 2019. Resultados: la mayoría de las personas con ECNT son mujeres (55 %), con una edad media de 70 años. Cuatro de cada cinco cuidadores son mujeres, con una edad media de 40 años, y ofrecen cuidados 14 horas por día, en promedio. El costo total mensual atribuido al cuidado familiar del paciente fue de 324.207 pesos colombianos, en promedio. Los costos más representativos son en salud, alimentación, vivienda, transporte y comunicaciones. El 60,5 % de los pacientes con ECNT asumían las finanzas del hogar antes de enfermar y, de estos, aproximadamente la mitad dejó de trabajar y la otra mitad presentó una reducción del 33 % en sus ingresos mensuales después de enfermar. Conclusión: los costos relacionados con el cuidado familiar aumentan y los ingresos de los pacientes con ECNT y de sus cuidadores disminuyen, debido a que se requieren tratamientos, cuidados e intervenciones complementarias e integrales, entre otras.

RESUMO Objetivo: determinar os custos diretos não aplicáveis aos serviços de saúde e indiretos derivados do cuidado familiar do paciente com doença crônica não transmissível (DCNT) de três instituições de saúde da área metropolitana de Bucaramanga, Colômbia. Metodologia: estudo transversal descritivo com 77 pessoas com DCNT e com seus cuidadores familiares, selecionados mediante amostra sistemática entre 2018 e 2019. Resultados: a maioria das pessoas com DCNT são mulheres (55 %), com idade média de 70 anos. Quatro de cada cinco cuidadores são mulheres, com idade média de 40 anos, e oferecem cuidados 14 horas por dia, em média. O custo total mensal destinado ao cuidado familiar do paciente foi de 324.207 pesos colombianos, em média. Os custos mais representativos são em saúde, alimentação, moradia, transporte e comunicações. Dos pacientes com DCNT, 60,5 % assumiam as finanças do lar antes de ficarem doentes e, destes, aproximadamente a metade deixou de trabalhar, e a outra metade apresentou redução de 33 % em seus ingressos mensais depois da doença. Conclusões: os custos relacionados com o cuidado familiar aumentam, e o ingresso dos pacientes com DCNT e o de seus cuidadores diminuem, devido a que são exigidos tratamentos, cuidados e intervenções complementares e integrais, entre outros.

Costes informales: definición, obtención y análisis. La importancia de su incorporación en las evaluaciones económicas en salud / Informal costs: definition, obtaining and analysis. The importance of its incorporation in economic evaluations in health

Introducción: Los costes informales derivan de cuidados informales que es la atención prestada a un enfermo o discapacitado por parte de personas que no son profesionales socio sanitarios y que no reciben una remuneración económica. El objetivo del trabajo es explicar los costes informales en salud, su definición, su obtención, análisis y el im­ pacto en su incorporación en las evaluaciones económicas en salud. Materiales y métodos: Se realizó una búsqueda del tema sobre costes informales en la base de datos de Medline­Pubmed y en la búsqueda de la biblioteca de la Universidad Carlos III Madrid vía internet a través de varias bases de datos como EconLit y ABI/IN­ FORM collection. Resultados: Se define los cuidados informales, los métodos para su medición en tiempo, en preferencias reveladas, preferencias establecidos fijados, otros métodos, la importan­ cia de incorporar los costos informales en las evaluaciones económicas en salud. Conclusión: La evaluación económica a nivel de la perspectiva de la sociedad se debe incluir, pero muchas veces se realiza según el pagador por lo difícil que puede ser su medición.

Introduction: Informal costs derive from informal care, which is the care provided to a sick or disabled person by people who are not socio­health professionals and who do not receive financial compensation. The objective of the work is to explain the informal costs in health, its definition, its obtaining, analysis and the impact on its incorporation in the economic health evaluations. Material and methods: A search of the topic on informal costs was carried out in the Medli­ ne­Pubmed database and in the search of the Carlos III Madrid University library via the In­ ternet through several databases such as EconLit and ABI / INFORM collection. Results: Informal care is defined, the methods for its measurement in time, in revealed preferences, established preferences, other methods, the importance of incorporating informal costs in economic health evaluations. Conclusion: The economic evaluation at the level of the society perspective must be in­ cluded, but many times it is carried out according to the payer because of how difficult its measurement can be done

[Complex care, high cost, and loss of income: frequent issues for families of children and adolescents with rare health conditions]. / Cuidado complexo, custo elevado e perda de renda: o que não é raro para as famílias de crianças e adolescentes com condições de saúde raras.

Estimates point to more than seven thousand rare diseases already identified, representing 6 to 10% of all diseases. In Brazil, a rare disease is defined as one that affects up to 65 persons per 100,000. The quantification of costs for the families of patients with such conditions and their impact on income provides information capable of supporting public policies for these youngsters. The study aimed to estimate the cost and loss of earnings, viewed from the perspective of families of children and adolescents with cystic fibrosis, mucopolysaccharidosis, and osteogenesis imperfecta. The study included 99 families of patients treated at a national referral hospital for rare diseases in Rio de Janeiro, based on the principal caregiver's report. The descriptive data analysis showed that the median direct nonmedical cost for families was BRL 2,156.56 (USD 570) for cystic fibrosis, BRL 1,060.00 (USD 280) for mucopolysaccharidosis, and BRL 1,908.00 (USD 505) for osteogenesis imperfecta. Loss of earnings exceeded 100% for all three diseases. A total of 54% of families fail to receive any social benefits. The estimate of coping costs indicated that 69% of the families had incurred loans and that 22.5% had sold household assets to cope with the treatment costs. Catastrophic expenditures were observed in families dealing with the three diseases. The results unveil costs that are rarely estimated, and not only in the field of rare diseases. The findings point to a major burden on the families' income. It is important to incorporate such studies in the discussion of financing, the incorporation of new technologies, and the supply of health services.

Estimativas apontam que há mais de 7 mil doenças raras já identificadas, que representam de 6 a 10% de todas as doenças no mundo. No Brasil, considera-se doença rara aquela que afeta até 65 pessoas em cada 100 mil indivíduos. Quantificar os custos para as famílias de pacientes com essas condições e o seu comprometimento sobre a renda fornece informações capazes de apoiar as políticas públicas destinadas a esses pacientes. O objetivo deste estudo foi estimar o custo e a perda de renda sob a perspectiva das famílias de crianças e adolescentes com fibrose cística, mucopolissacaridoses e osteogênese imperfeita. Foi realizado com 99 famílias de pacientes atendidos em um hospital de referência nacional em doenças raras no Rio de Janeiro, mediante relato do cuidador principal. A análise descritiva dos dados mostrou que o custo mediano direto não médico para as famílias foi de R$ 2.156,56 para fibrose cística, R$ 1.060,00 para mucopolissacaridoses e R$ 1.908,00 para osteogênese imperfeita. A perda de renda superou 100% para as três condições analisadas. Um total de 54% das famílias não recebem benefícios assistenciais. A estimativa de coping costs indicou que 69% das famílias acessaram empréstimos e 22,5% venderam bens para lidar com os custos do curso do tratamento. Foram verificados gastos catastróficos para as famílias das três doenças analisadas. Os resultados trazem à tona um tema que descortina custos pouco estimados, não somente no campo das doenças raras. São resultados que indicam uma carga importante sobre a renda das famílias. É importante incorporar estudos de tal natureza na discussão do financiamento, da incorporação de novas tecnologias e da oferta de serviços de saúde.

Las estimaciones apuntan que hay más de 7 mil enfermedades raras ya identificadas, que representan de un 6 a un 10% de todas las enfermedades en el mundo. En Brasil, se considera enfermedad rara a aquella que afecta hasta a 65 personas por cada 100 mil individuos. Cuantificar los costos para las familias de pacientes que las sufren, y el peso económico que representan para la renta familiar, proporciona información capaz de apoyar políticas públicas destinadas a estos pacientes. El objetivo de este estudio fue estimar el coste y la pérdida de renta desde la perspectiva de las familias de niños y adolescentes con fibrosis cística, mucopolisacaridosis y osteogénesis imperfecta. Se realizó con 99 familias de pacientes atendidos en un hospital de referencia nacional en enfermedades raras en Río de Janeiro, a través del relato del cuidador principal. El análisis descriptivo de los datos mostró que el coste medio directo no-médico para las familias fue de BRL 2.156,56 en la fibrosis cística, BRL 1.060,00 en la mucopolisacaridosis y BRL 1.908,00 en la osteogénesis imperfecta. La pérdida de renta superó el 100% en las tres condiciones analizadas. Un total de un 54% de las familias no recibe beneficios asistenciales. La estimativa de coping costs indicó que un 69% de las familias accedieron a préstamos y un 22,5% vendieron bienes para lidiar con los costos del tratamiento en curso. Se observaron gastos catastróficos para las familias de las tres enfermedades analizadas. Los resultados traen a colación un tema que desvela costos poco estimados, no solamente en el campo de las enfermedades raras. Son resultados que indican una carga importante sobre la renta de las familias. Es importante incorporar estudios de esta naturaleza en la discusión sobre la financiación, incorporación de nuevas tecnologías y oferta de servicios de salud.

Do Income Supplemental Programs for Older Adults' Help Reduce Primary Caregiver Burden? Evidence from Mexico.

In countries such as Mexico without formal public long-term care policies, informal care becomes the main source of support for older adults. Alternative social programs, such as supplemental income programs, for older adults could alleviate caregiver burden, especially if supplemental income were to be used for paid care or to compensate non-paid family caregivers. This work is the first to analyze the effects of a supplemental income program for older adults on primary caregiver burden. To identify how such a program might affect caregiver burden, we analyze rich panel data on 433 adults 70 years and older in two communities, one receiving a supplemental income program and the other not, in Yucatan, Mexico. Data were collected in 2008 and 2009 among treatment and control groups before and 6 months after program introduction. We employ a difference-in-differences approach. In our sample, most care is provided by non-paid female caregivers. We find that individuals in both the treatment and control groups received fewer hours of care over time. The decrease was lower for older adults who received the supplemental income, but the difference with those who did not was not statistically significant. We also observe few changes on caregiving burden; even after program introduction, more than 98% of caregivers remained unpaid and the same primary caregiver remained. Altogether, our work suggests supplemental income programs have negligible effects on caregiving, making evident the urgent need for other strategies to support non-paid caregivers who bear most of the burden for old-age care in Mexico.

Depressive Symptoms and Care Demands Among Primary Caregivers of Young Children with Evidence of Congenital Zika Virus Infection in Brazil.

OBJECTIVE: Evidence suggests that caring for a child with special health care needs can affect many domains of family life, including caregiver mental health. However, few studies have examined these outcomes among families impacted by the Zika virus (ZIKV). This study examines depressive symptom severity and care demands among primary caregivers of children, aged 15 to 26 months, with evidence of congenital Zika virus infection (ZVI). METHODS: A sample of primary caregivers of children with evidence of congenital ZVI in northeastern Brazil (n = 150) reported on depressive symptoms, care demands, and their children's development. Children were categorized into groups according to their developmental delay status. Bivariate analyses were run to test for differences between groups. A path analysis model was used to examine the indirect effects of developmental delay on depressive symptoms through economic challenges and time spent providing health care at home and whether these associations varied by child care support. RESULTS: Compared to primary caregivers of children without developmental delay, primary caregivers of children with developmental delay had higher depression scores (p = 0.002), reported more economic (p < 0.001) and child care (p < 0.001) challenges, and spent more time providing health care at home (p < 0.001). Among primary caregivers who did not have child care support, developmental delay had a significant indirect effect on depressive symptoms through economic challenges but not through time spent providing health care at home. CONCLUSION: For families impacted by the ZIKV outbreak in Brazil, economic and child care challenges may be associated with primary caregiver mental health.

Cuidado complexo, custo elevado e perda de renda: o que não é raro para as famílias de crianças e adolescentes com condições de saúde raras / Complex care, high cost, and loss of income: frequent issues for families of children and adolescents with rare health conditions / Cuidado complejo, costo elevado y pérdida de renta: lo que no es raro para las familias de niños y adolescentes que sufren problemas de salud raros

Resumo: Estimativas apontam que há mais de 7 mil doenças raras já identificadas, que representam de 6 a 10% de todas as doenças no mundo. No Brasil, considera-se doença rara aquela que afeta até 65 pessoas em cada 100 mil indivíduos. Quantificar os custos para as famílias de pacientes com essas condições e o seu comprometimento sobre a renda fornece informações capazes de apoiar as políticas públicas destinadas a esses pacientes. O objetivo deste estudo foi estimar o custo e a perda de renda sob a perspectiva das famílias de crianças e adolescentes com fibrose cística, mucopolissacaridoses e osteogênese imperfeita. Foi realizado com 99 famílias de pacientes atendidos em um hospital de referência nacional em doenças raras no Rio de Janeiro, mediante relato do cuidador principal. A análise descritiva dos dados mostrou que o custo mediano direto não médico para as famílias foi de R$ 2.156,56 para fibrose cística, R$ 1.060,00 para mucopolissacaridoses e R$ 1.908,00 para osteogênese imperfeita. A perda de renda superou 100% para as três condições analisadas. Um total de 54% das famílias não recebem benefícios assistenciais. A estimativa de coping costs indicou que 69% das famílias acessaram empréstimos e 22,5% venderam bens para lidar com os custos do curso do tratamento. Foram verificados gastos catastróficos para as famílias das três doenças analisadas. Os resultados trazem à tona um tema que descortina custos pouco estimados, não somente no campo das doenças raras. São resultados que indicam uma carga importante sobre a renda das famílias. É importante incorporar estudos de tal natureza na discussão do financiamento, da incorporação de novas tecnologias e da oferta de serviços de saúde.

Abstract: Estimates point to more than seven thousand rare diseases already identified, representing 6 to 10% of all diseases. In Brazil, a rare disease is defined as one that affects up to 65 persons per 100,000. The quantification of costs for the families of patients with such conditions and their impact on income provides information capable of supporting public policies for these youngsters. The study aimed to estimate the cost and loss of earnings, viewed from the perspective of families of children and adolescents with cystic fibrosis, mucopolysaccharidosis, and osteogenesis imperfecta. The study included 99 families of patients treated at a national referral hospital for rare diseases in Rio de Janeiro, based on the principal caregiver's report. The descriptive data analysis showed that the median direct nonmedical cost for families was BRL 2,156.56 (USD 570) for cystic fibrosis, BRL 1,060.00 (USD 280) for mucopolysaccharidosis, and BRL 1,908.00 (USD 505) for osteogenesis imperfecta. Loss of earnings exceeded 100% for all three diseases. A total of 54% of families fail to receive any social benefits. The estimate of coping costs indicated that 69% of the families had incurred loans and that 22.5% had sold household assets to cope with the treatment costs. Catastrophic expenditures were observed in families dealing with the three diseases. The results unveil costs that are rarely estimated, and not only in the field of rare diseases. The findings point to a major burden on the families' income. It is important to incorporate such studies in the discussion of financing, the incorporation of new technologies, and the supply of health services.

Resumen: Las estimaciones apuntan que hay más de 7 mil enfermedades raras ya identificadas, que representan de un 6 a un 10% de todas las enfermedades en el mundo. En Brasil, se considera enfermedad rara a aquella que afecta hasta a 65 personas por cada 100 mil individuos. Cuantificar los costos para las familias de pacientes que las sufren, y el peso económico que representan para la renta familiar, proporciona información capaz de apoyar políticas públicas destinadas a estos pacientes. El objetivo de este estudio fue estimar el coste y la pérdida de renta desde la perspectiva de las familias de niños y adolescentes con fibrosis cística, mucopolisacaridosis y osteogénesis imperfecta. Se realizó con 99 familias de pacientes atendidos en un hospital de referencia nacional en enfermedades raras en Río de Janeiro, a través del relato del cuidador principal. El análisis descriptivo de los datos mostró que el coste medio directo no-médico para las familias fue de BRL 2.156,56 en la fibrosis cística, BRL 1.060,00 en la mucopolisacaridosis y BRL 1.908,00 en la osteogénesis imperfecta. La pérdida de renta superó el 100% en las tres condiciones analizadas. Un total de un 54% de las familias no recibe beneficios asistenciales. La estimativa de coping costs indicó que un 69% de las familias accedieron a préstamos y un 22,5% vendieron bienes para lidiar con los costos del tratamiento en curso. Se observaron gastos catastróficos para las familias de las tres enfermedades analizadas. Los resultados traen a colación un tema que desvela costos poco estimados, no solamente en el campo de las enfermedades raras. Son resultados que indican una carga importante sobre la renta de las familias. Es importante incorporar estudios de esta naturaleza en la discusión sobre la financiación, incorporación de nuevas tecnologías y oferta de servicios de salud.

The Economic Value of Informal Caregiving for Persons With Dementia: Results From 38 States, the District of Columbia, and Puerto Rico, 2015 and 2016 BRFSS.

OBJECTIVES: To estimate the economic value from a societal perspective of informal caregiving of persons with dementia in 38 states, the District of Columbia, and Puerto Rico. METHODS: Using a cost replacement method and data from the 2015 and 2016 Behavioral Risk Factor Surveillance System caregiver module, the US Bureau of Labor Statistics May 2016 Occupation Profiles, and the US Department of Labor, we estimated the number and economic direct cost of caregiving hours. RESULTS: An estimated 3.2 million dementia caregivers provided more than 4.1 billion hours of care, with an average of 1278 hours per caregiver. The median hourly value of dementia caregiving was $10.28. Overall, we valued these caregiving hours at $41.5 billion, with an average of $13 069 per caregiver. CONCLUSIONS: Caregivers of persons with dementia provide care that has important economic implications. Without these efforts, many people would either not receive needed care or have to pay for that support. Surveillance data can be used to estimate the contributions of informal caregivers and the economic value of the care they provide.

An assessment of direct and indirect costs of dementia in Brazil.

BACKGROUND: To analyze costs associated with dementia based on a cross-sectional study in the Brazilian health system. METHODS: Direct and indirect costs were estimated by conducting comprehensive interviews on the use of resources in a sample of 156 patients with dementia treated at an outpatient memory clinic of a tertiary hospital. A regression model was used to determine the main determinants of costs associated with dementia. RESULTS: Global costs of dementia were US$1,012.35; US$1,683.18 and US$1,372.30 per patient/month for mild, moderate and severe stages, respectively. Indirect costs ranged from US$536.62 to US$545.17 according to severity. Dementia costs were influenced by medication, FAST score, and educational level of caregiver. DISCUSSION: The study represents an original contribution toward establishing direct and indirect costs of dementia in Brazil. Results indicate significant economic impacts, including projection of annual costs of US$16,548.24 per patient.

Health outcomes of unpaid care workers in low-income and middle-income countries: a protocol for a systematic review.

INTRODUCTION: The literature on health outcomes of unpaid care work has included studies coming from high-income countries, and has reported gender inequalities that make caregiving women more vulnerable to physical and mental health problems. The impact of unpaid care work on the health of those living in low-income and middle-income countries, where women's autonomy is more limited, is unknown. METHODS AND ANALYSIS: We will conduct a systematic review of observational studies on health outcomes according to unpaid caregiving status and sex of people living in low-income and middle-income countries. Cumulative Index to Nursing and Allied Health Literature, PubMed and Scientific Electronic Library Online Citation Index will be searched for reports in English or Spanish with published results from inception to 1 June 2017. We expect the studies to have recruited individuals in low-income and middle-income countries, including exposed and non-exposed groups to participation in unpaid care to members if their households or community reporting either physical and/or mental health problems, self-reported health-related quality of life, self-care skills/behaviours or use of any healthcare services in the participants. Data extraction, the assessment of risk of bias and confounding, and qualitative synthesis will be carried out by two independent reviewers with the assistance of a third party. DISSEMINATION: Results are expected to be published in peer-reviewed journals from the field of health and gender, or health and inequality. PROSPERO REGISTRATION NUMBER: CRD42017071785.

A journey without maps-Understanding the costs of caring for dependent older people in Nigeria, China, Mexico and Peru.

PURPOSE OF THE STUDY: Populations in Latin America, Asia and sub-Saharan Africa are rapidly ageing. The extent to which traditional systems of family support and security can manage the care of increased numbers of older people with chronic health problems is unclear. Our aim was to explore the social and economic effects of caring for an older dependent person, including insight into pathways to economic vulnerability. DESIGN & METHODS: We carried out a series of household case studies across urban and rural sites in Peru, Mexico, China and Nigeria (n = 24), as part of a cross-sectional study, nested within the 10/66 Dementia Research Group cohort. Case studies consisted of in-depth narrative style interviews (n = 60) with multiple family members, including the older dependent person. RESULTS: Governments were largely uninvolved in the care and support of older dependent people, leaving families to negotiate a 'journey without maps'. Women were de facto caregivers but the traditional role of female relative as caregiver was beginning to be contested. Household composition was flexible and responsive to changing needs of multiple generations but family finances were stretched. IMPLICATIONS: Governments are lagging behind sociodemographic and social change. There is an urgent need for policy frameworks to support and supplement inputs from families. These should include community-based and residential care services, disability benefits and carers allowances. Further enhancement of health insurance schemes and scale-up of social pensions are an important component of bolstering the security of dependent older people and supporting their continued social and economic participation.

Willingness to Pay in Caregivers of Patients Affected by Schizophrenia.

BACKGROUND: Schizophrenia is a debilitating disorder that often requires the affected individual to receive care from a caregiver. Willingness to Pay (WTP) technique allows a valuation of the health state preferences by assessing the impact of the disease and translating it into monetary terms. AIMS OF THE STUDY: The objective was to determine the WTP of schizophrenic patients' caregivers on a hypothetical recovery scenario and correlate it to socio-demographic and clinical characteristics, Knowledge of Disease, Quality of life and Burden of Disease. METHODS: A convenience sample consecutively assessed 189 outpatients' caregivers from Schizophrenia Program of Federal University of Sao Paulo. A single caregiver was considered for each patient, taking into consideration their close relationship and their direct involvement in the treatment. Open WTP questionnaire for a hypothetical schizophrenia recovery scenario, KAST (Knowledge of Disease), SF-6D (Quality of life) and ZBI-22 (Burden of Disease) scales were applied. RESULTS: A monthly WTP mean value (SD) of US\USD 63.63 (111.88) was found. The average value (SD) found was 12.96 (2.45) on KAST, 0.78 (0.08) on SF6D and 29.91 (16.10) on ZARIT. Income, education, social class, knowledge of disease and burden of caregiver were positively correlated to the WTP value. By linear regression model, income and education remained significant. CONCLUSION: Willingness to Pay (WTP) is a method that can be used to determine the strength of preference of patients and caregivers for a recovery in schizophrenia. The higher the income and education, the higher the willingness to pay. No clinical characteristics of patients had a statistically significant relation to the value the caregiver would pay. IMPLICATIONS FOR HEALTH POLICIES: WTP is a potentially useful tool to determine values and health care preferences, and can be used for the development of mental health policies. IMPLICATIONS FOR FURTHER RESEARCH: Future research should be used to enhance WTP tool in mental health studies on the impact of diseases, including schizophrenia.

The cost of dementia in an unequal country: The case of Chile.

We study the economic cost of dementia in Chile, and its variation according to socioeconomic status (SES). We use primary data from a survey of 330 informal primary caregivers who completed both a RUD-Lite and a socio-demographic questionnaire to evaluate the severity of dementia and caregiver's burden. The costs of dementia are broken into three components: direct medical costs (medical care, drugs, tests); direct social costs (social service, daycare); and indirect costs (mostly associated to informal care). The average monthly cost per patient is estimated at US$ 1,463. Direct medical costs account for 20 per cent, direct social costs for 5 per cent and indirect costs for 75 per cent of the total cost. The mean monthly cost is found to be inversely related to SES, a pattern largely driven by indirect costs. The monthly cost for high SES is US$ 1,083 and US$ 1,588 for low SES. A multivariate regression analysis suggests that severity of dementia and caregiver's burden account for between 49 and 70 per cent of the difference in the indirect cost across SES. However, between one-third and one-half of the variation across SES is not due to gradient in severity of dementia. Direct medical costs increase in higher SES, reflecting differences in purchasing power, while indirect costs are inversely related to SES and more than compensate differences in medical costs. Moreover, in lower SES groups, female caregivers, typically family members who are inactive in the labor market, mostly provide informal care. The average annual cost of dementia in Chile (US$ 17,559) is lower in comparison to high-income countries (US$ 39,595) and the proportion of cost related to informal cost is higher (74 per cent compared to 40 per cent). SES is a key determinant in the cost of dementia. In the absence of universal access to treatment, part of the social cost of dementia potentially preserves or increases income and gender inequality.

The family of the child with cancer: socioeconomic needs. / A família da criança com câncer: necessidades sócio-econômicas.

OBJECTIVE To identify the socioeconomic variables which influence the families of the child with cancer. METHODS Quantitative, descriptive, correlational research with 128 families of children with cancer. Three instruments were used: "Questionnaire assessing the impact on the family of children with cancer", "Social Support Satisfaction Scale", and "Graffar Scale". RESULTS Families report increased economic spending due to the disease, with the displacements to hospital and medication. The loss of income by one of the parents also exacerbates the economic impact of the disease. Families with greater support needs and lower social support present greater economic impact. CONCLUSION The social support assumes an important role in the decrease of the economic needs incited by the disease. Nurses must identify the economic needs of the families and become part of the support network of them, being a source of support so they can strengthen themselves in caring.