The economic burden of households affected by tuberculosis in Brazil: First national survey results, 2019-2021.

BACKGROUND: One 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. METHODS: A 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. RESULTS: We 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). CONCLUSIONS: Although 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.

Follow-up of patients diagnosed with and treated for tuberculosis in Brazil: financial burden on the household.

OBJECTIVE: To evaluate the implications of the proportion of annual family income spent in the pre- and post-diagnosis periods in tuberculosis patients followed for after at least one year after completing tuberculosis treatment in Brazil. METHODS: This was a cross-sectional study of tuberculosis patients followed for at least one year after completing tuberculosis treatment in five Brazilian capitals (one in each region of the country). RESULTS: A total of 62 patients were included in the analysis. The overall average cost of tuberculosis was 283.84 Brazilian reals (R$) in the pre-diagnosis period and R$4,161.86 in the post-diagnosis period. After the costs of tuberculosis disease, 71% of the patients became unemployed, with an overall increase in unemployment; in addition, the number of patients living in nonpoverty decreased by 5%, the number of patients living in poverty increased by 6%, and the number of patients living in extreme poverty increased by 5%. The largest proportion of annual household income to cover the total costs of tuberculosis was for the extremely poor (i.e., 40.37% vs. 11.43% for the less poor). CONCLUSIONS: Policies to mitigate catastrophic costs should include interventions planned by the health care system and social protection measures for tuberculosis patients with lower incomes in order to eliminate the global tuberculosis epidemic by 2035-a WHO goal in line with the United Nations Sustainable Development Goals.

Follow-up of patients diagnosed with and treated for tuberculosis in Brazil: financial burden on the household / Acompanhamento de pacientes com diagnóstico e tratamento de tuberculose no Brasil: ônus financeiro para a família

ABSTRACT Objective: To evaluate the implications of the proportion of annual family income spent in the pre- and post-diagnosis periods in tuberculosis patients followed for after at least one year after completing tuberculosis treatment in Brazil. Methods: This was a cross-sectional study of tuberculosis patients followed for at least one year after completing tuberculosis treatment in five Brazilian capitals (one in each region of the country). Results: A total of 62 patients were included in the analysis. The overall average cost of tuberculosis was 283.84 Brazilian reals (R$) in the pre-diagnosis period and R$4,161.86 in the post-diagnosis period. After the costs of tuberculosis disease, 71% of the patients became unemployed, with an overall increase in unemployment; in addition, the number of patients living in nonpoverty decreased by 5%, the number of patients living in poverty increased by 6%, and the number of patients living in extreme poverty increased by 5%. The largest proportion of annual household income to cover the total costs of tuberculosis was for the extremely poor (i.e., 40.37% vs. 11.43% for the less poor). Conclusions: Policies to mitigate catastrophic costs should include interventions planned by the health care system and social protection measures for tuberculosis patients with lower incomes in order to eliminate the global tuberculosis epidemic by 2035-a WHO goal in line with the United Nations Sustainable Development Goals.

RESUMO Objetivo: Avaliar as implicações da proporção da renda familiar anual gasta nos períodos pré e pós-diagnóstico em pacientes com tuberculose acompanhados durante pelo menos um ano após o término do tratamento da tuberculose no Brasil. Métodos: Estudo transversal com pacientes com tuberculose acompanhados durante pelo menos um ano após o término do tratamento da tuberculose em cinco capitais brasileiras (uma em cada região do país). Resultados: Foram incluídos na análise 62 pacientes. O custo médio global da tuberculose foi de R$ 283,84 no período pré-diagnóstico e de R$ 4.161,86 no período pós-diagnóstico. Após os custos da doença tuberculosa, 71% dos pacientes ficaram desempregados, com um aumento global do desemprego; além disso, o número de pacientes não pobres diminuiu 5%, o número de pacientes pobres aumentou 6% e o número de pacientes extremamente pobres aumentou 5%. A maior proporção de renda familiar anual para cobrir os custos totais da tuberculose foi observada nos pacientes extremamente pobres (40,37% vs. 11,43% nos menos pobres). Conclusões: As políticas para mitigar os custos catastróficos devem incluir intervenções planejadas pelo sistema de saúde e medidas de proteção social para pacientes de baixa renda com tuberculose, a fim de eliminar a epidemia global de tuberculose até 2035, uma meta da OMS alinhada com os Objetivos de Desenvolvimento Sustentável propostos pela Organização das Nações Unidas.

Catastrophic costs and social sequels due to tuberculosis diagnosis and treatment in Brazil. / Custos catastróficos e sequelas sociais decorrentes do diagnóstico e tratamento da tuberculose no Brasil.

OBJECTIVE: To evaluate the impact of catastrophic costs on unfavorable tuberculosis treatment outcomes. METHODS: This was a prospective cohort study, conducted in five Brazilian state capitals (Manaus, Recife, Vitória, Campo Grande and Porto Alegre) from June 2016 to July 2018. Logistic regression was used to calculate the odds ratio (OR) and 95% confidence intervals (95%CI). RESULTS: Of the 350 participants, 310 were included, of whom 30 presented unfavorable outcomes. Catastrophic cost (OR=2.53 -95% CI 1.13;5.67) and divorce (OR=5.29 -95% CI 1.39;20.05) increased the chances of unfavorable outcomes. CONCLUSION: Financial difficulties during tuberculosis treatment may impair its outcome. Catastrophic cost and divorce were determining factors for treatment outcomes.

Custos catastróficos e sequelas sociais decorrentes do diagnóstico e tratamento da tuberculose no Brasil / Costos catastróficos y consecuencias sociales resultantes del diagnóstico y tratamiento de la tuberculosis en Brasil / Catastrophic costs and social sequels due to tuberculosis diagnosis and treatment in Brazil

Objetivo: Avaliar o impacto dos custos catastróficos no desfecho desfavorável do tratamento da tuberculose. Métodos: Estudo de coorte prospectiva, realizado em cinco capitais de estados brasileiros (Manaus, Recife, Vitória, Campo Grande e Porto Alegre) no período de junho de 2016 a julho de 2018. Empregou-se regressão logística para calcular a razão de chances (odds ratio, OR) e os intervalos de confiança de 95% (IC95%). Resultados: Dos 350 participantes, 310 foram incluídos, dos quais 30 apresentaram desfecho desfavorável. Custo catastrófico (OR=2,53 - IC95% 1,13;5,67) e divórcio (OR=5,29 - IC95% 1,39;20,05) aumentaram as chances de desfecho desfavorável. Conclusão: Dificuldades financeiras durante o tratamento da tuberculose podem prejudicar seu desfecho. Os fatores determinantes para o desfecho do tratamento foram custo catastrófico e divórcio.

Objetivo: Evaluar el impacto de los costos catastróficos en el resultado desfavorable del tratamiento de la tuberculosis. Métodos: Estudio de cohorte prospectiva realizado en cinco capitales de estados brasileños (Manaus, Recife, Vitória, Campo Grande y Porto Alegre) entre junio de 2016 y julio de 2018. Se utilizó la regresión logística para calcular los odds ratios (OR) y los intervalos de confianza del 95% (IC95%). Resultados: De los 350 participantes, se incluyeron 310, y 30 tuvieron resultado desfavorable. El costo catastrófico (OR=2,53 - IC95% 1,13;5,67) y el divorcio (OR=5,29 - IC95% 1,39;20,05) aumentaron la obtención de un resultado desfavorable. Conclusión: Dificultades económicas enfrentadas durante el tratamiento de la tuberculosis pueden perjudicar el resultado del tratamiento. Las determinantes del tratamiento fueron el costo catastrófico y el divorcio.

Objective: To evaluate the impact of catastrophic costs on unfavorable tuberculosis treatment outcomes. Methods: This was a prospective cohort study, conducted in five Brazilian state capitals (Manaus, Recife, Vitória, Campo Grande and Porto Alegre) from June 2016 to July 2018. Logistic regression was used to calculate the odds ratio (OR) and 95% confidence intervals (95%CI). Results: Of the 350 participants, 310 were included, of whom 30 presented unfavorable outcomes. Catastrophic cost (OR=2.53 -95% CI 1.13;5.67) and divorce (OR=5.29 -95% CI 1.39;20.05) increased the chances of unfavorable outcomes. Conclusion: Financial difficulties during tuberculosis treatment may impair its outcome. Catastrophic cost and divorce were determining factors for treatment outcomes.

Custos catastróficos em pacientes com tuberculose no Brasil: estudo em cinco capitais / Costos catastróficos en pacientes con tuberculosis en Brasil: un estudio en cinco capitales / Catastrophic costs in tuberculosis patients in Brazil: a study in five capitals

Resumo Objetivo avaliar o impacto econômico domiciliar do adoecimento pela tuberculose no Brasil. Método pesquisa transversal multicêntrica de 2016 a 2018, em cinco capitais do Brasil, em pacientes diagnosticados com tuberculose. Os custos totais foram a soma dos custos diretos e indiretos incorridos antes e durante o diagnóstico e tratamento. A regressão logística foi utilizada para estudar determinantes de custos catastróficos. A pobreza foi medida como renda familiar per capita diária < U$ 5,5. Resultados trezentos e sessenta e um pacientes foram inscritos no estudo. O custo extrapolação foi de R$3.664,47 (DP: R$ 2.667,67) e o custo total de extrapolação foi de R$22.291,82 (DP: R$ 16.259,50). No geral, 29% dos participantes do estudo foram caracterizados como pobres antes da tuberculose, e 39% depois. Em média, a renda diminuiu em 11% dos participantes e 41% tiveram custos catastróficos. Os determinantes estatisticamente significativos de experimentar custos catastróficos foram: participante ser o chefe da família, vivendo na pobreza antes da tuberculose, desemprego e interrupção do trabalho durante o tratamento (p < 0,05). Conclusão e implicações para a prática embora o tratamento seja financiado pelo governo, a tuberculose continua resultando em custos catastróficos e diminuição da renda para muitas famílias no Brasil.

Resumen Objetivo evaluar el impacto económico domiciliario de enfermarse por tuberculosis en Brasil. Método Investigación multicéntrica transversal de 2016 a 2018, en cinco capitales de Brasil, en pacientes diagnosticados con tuberculosis. Los costos totales fueron la suma de los costos directos e indirectos incurridos antes y durante el diagnóstico y el tratamiento. Se utilizó la regresión logística para estudiar los determinantes de los costos catastróficos. La pobreza se midió como un ingreso familiar diario per cápita < U$ 5,5. Resultados se inscribieron 361 pacientes en el estudio. El costo de extrapolación fue de R$ 3.664,47 (DE: R$ 2.667,67) y el costo total de extrapolación fue R$ 22.291,82 (DE: R$ 16.259,50). En general, el 29% de los participantes se caracterizaron como pobres antes de la tuberculosis y el 39%, después. En promedio, los ingresos disminuyeron en 11% de los participantes y el 41% tuvo costos catastróficos. Determinantes estadísticos de costos catastróficos: participante ser cabeza de familia; vivir en pobreza antes de la tuberculosis; desempleo; interrupción del trabajo durante el tratamiento (p<0.05). Conclusión e implicaciones para la práctica aunque el tratamiento es financiado por el gobierno, la tuberculosis sigue teniendo costos catastróficos y una disminución de los ingresos para muchas familias en Brasil.

Abstract Objective to assess the home economics impact of illness from Tuberculosis in Brazil. Method multicenter cross-sectional research from 2016 to 2018, in five capitals of Brazil, in patients diagnosed with tuberculosis. The total costs were the sum of the direct and indirect costs incurred before and during diagnosis and treatment. Logistic regression was used to study determinants of catastrophic costs. Poverty was measured as daily household income per capita < U$ 5.5. Results 361 patients were enrolled in the study. The extrapolation cost was R$ 3,664.47 (SD: R$ 2,667.67) and the total extrapolation cost was R$ 22,291.82 (SD: R$ 16,259.50). Overall, 29% of study participants were characterized as poor before tuberculosis, and 39% afterwards. On average, income declined by 11% among participants and 41% had catastrophic costs. The statistically significant determinants of experiencing catastrophic costs were: participant being the head of the family; living in poverty before tuberculosis; unemployment and interruption of work during treatment (p <0.05). Conclusion and implications for practice although treatment is financed by the government, tuberculosis continues to cause catastrophic costs and decreased of income for many families in Brazil.

Adaptação transcultural do instrumento "tool to estimate patient's costs" em municípios prioritários do Brasil no controle da tuberculose / Cross-cultural adaptation of the instrument "tool to estimate patient's costs" in priority municipalities of Brazil in tuberculosis control

Introduction: Tuberculosis is historically associated with poverty, generating costs that can influence treatment. Considering the impact of the costs of illness, the importance of adapting the instrument is highlighted. Objective: To adapt transculturally to Brazilian Portuguese the instrument Tool to Estimate Patient's Costs. Methods: Study of the type transcultural adaptation of instrument. The translation followed the criteria described by Herdman, 1998, in order to preserve functional equivalence as much as possible. The questionnaire with cross-cultural adaptation was applied to 77 patients, with at least one full month of treatment for the disease. Results: Instrument was shown with Cronbach Alpha above 0.71 constituting a good tool for measuring the costs of the disease, being necessary modifications. Conclusions: This study suggests the creation of an instrument adapted for the treatment of TB in Brazil, for the evaluation of costs with the illness by tuberculosis.

Introducción: La tuberculosis está históricamente asociada con la pobreza, generando costes que pueden influir en el tratamiento. Considerando el impacto de estas cuantías de la enfermedad, se destaca la importancia de la adaptación del instrumento. Objetivo: Adaptar transculturalmente al portugués brasileño la herramienta "Tool to Estimate Patient's Costs". Métodos: Estudio del tipo adaptación transcultural del instrumento. La traducción siguió los criterios descritos por Herdman (1998), para preservar al máximo la equivalencia funcional. El cuestionario, con adaptación transcultural, fue aplicado en 77 pacientes, con al menos un mes completo de tratamiento para la enfermedad. Resultados: El instrumento presentó resultado de 0,71 con el alfa de Cronbach, constituyéndose en una buena herramienta para medir los costes de la enfermedad, siendo necesarias modificaciones. Conclusiones: Este estudio sugiere la creación de un instrumento adaptado para el tratamiento de la TB en Brasil, para la evaluación de los costes con la enfermedad por tuberculosis.

Introdução: A tuberculose é historicamente associada à pobreza, gerando despesas que podem influenciar no tratamento. Considerando o impacto dos custos do adoecimento, destaca-se a importância da adaptação do instrumento. Objetivo: Adaptar transculturalmente para o português brasileiro o instrumento "Tool to Estimate Patient's Costs". Métodos: Estudo do tipo adaptação transcultural de instrumento. A tradução seguiu os critérios descritos por Herdman (1998), de forma a preservar ao máximo a equivalência funcional. O questionário, com adaptação transcultural, foi aplicado em 77 pacientes, com pelo menos um mês completo de tratamento para a doença. Resultados: Instrumento mostrou-se com alfa de Cronbach acima de 0,71, constituindo-se em uma boa ferramenta para mensuração dos custos da doença, sendo necessárias modificações. Conclusões: Este estudo sugere a criação de um instrumento adaptado para o tratamento da TB no Brasil, para avaliação dos custos com o adoecimento por tuberculose.

Cost-effectiveness of community health worker versus home-based guardians for directly observed treatment of tuberculosis in Vitória, Espírito Santo State, Brazil.

The objective of this study was to compare the costs and outcomes associated with guardian-supervised directly observed treatment relative to the standard of care Directly Observed Therapy, Short Course (DOTS) provided by community health workers (CHW). New cases of culture-positive pulmonary tuberculosis (TB) treated in Vitória, Espírito Santo State, Brazil, between January 2005 and December 2006 were interviewed and chose their preferred treatment strategy. Costs incurred by providers and patients (and patients' families) were estimated, and cost-effectiveness was assessed by comparing costs per successfully treated patient. 130 patients were included in the study; 84 chose CHW-supervised DOTS and 46 chose guardian-supervised DOTS. 45 of 46 (98%) patients treated with guardian-supervised DOTS were cured or completed treatment compared to 70/84 (83%) of the CHW-supervised patients (p = 0.01). Logistic regression showed only the strategy of supervision to be a significant association with treatment outcome, with guardian-supervised care strongly protective. Cost per patient treated with guardian-supervised DOTS was US$398, compared to US$548 for CHW-supervised DOTS. The guardian-supervised DOTS is an attractive option to complement CHW-supervised DOTS.

Cost-effectiveness of community health worker versus home-based guardians for directly observed treatment of tuberculosis in Vitória, Espírito Santo State, Brazil / Custo-efetividade dos agentes comunitários de saúde versus supervisores domiciliares na realização do tratamento supervisionado da tuberculose, Vitória, Espírito Santo, Brasil

The objective of this study was to compare the costs and outcomes associated with guardian-supervised directly observed treatment relative to the standard of care Directly Observed Therapy, Short Course (DOTS) provided by community health workers (CHW). New cases of culture-positive pulmonary tuberculosis (TB) treated in Vitória, Espírito Santo State, Brazil, between January 2005 and December 2006 were interviewed and chose their preferred treatment strategy. Costs incurred by providers and patients (and patients' families) were estimated, and cost-effectiveness was assessed by comparing costs per successfully treated patient. 130 patients were included in the study; 84 chose CHW-supervised DOTS and 46 chose guardian-supervised DOTS. 45 of 46 (98 percent) patients treated with guardian-supervised DOTS were cured or completed treatment compared to 70/84 (83 percent) of the CHW-supervised patients (p = 0.01). Logistic regression showed only the strategy of supervision to be a significant association with treatment outcome, with guardian-supervised care strongly protective. Cost per patient treated with guardian-supervised DOTS was US$398, compared to US$548 for CHW-supervised DOTS. The guardian-supervised DOTS is an attractive option to complement CHW-supervised DOTS.

Comparar os custos e os resultados associados ao tratamento de tuberculose (TB) supervisionado por domiciliares quanto ao realizado pelos agentes comunitários de saúde (ACS). Participaram do estudo todos os casos de TB pulmonar com cultura positiva tratada na cidade de Vitória, Espírito Santo, Brasil, entre janeiro de 2005 e dezembro de 2006. Os pacientes escolheram a estratégia de tratamento preferencial. Os custos incorridos pelos prestadores e os doentes foram estimados, e relação custo-efetividade foi avaliada comparando os custos por doente tratado com sucesso. Um total de 130 pacientes foi incluído no estudo, 84 escolheram ACS e 46 escolheram tratamento supervisionado por domiciliares. 45 de 46 (98 por cento) dos doentes tratados com supervisionamento por domiciliares foram curados ou tratamento completado em comparação com 70/84 (83 por cento) dos pacientes ACS (p = 0,01). Regressão logística mostrou o tratamento supervisionado por domiciliares significativamente protetor em relação ao abandono do tratamento da TB ao realizado pelo ACS. Custo por paciente tratado com o tratamento supervisionado por domiciliares foi de US$ 398, em comparação com US$ 548 para ACS. Tratamento supervisionado por domiciliares é uma opção mais custo-efetividade do que a supervisão pelo ACS.