ABSTRACT This study aimed to reinforce the importance of the epidemiological surveillance of multidrug-resistant tuberculosis (MDR-TB) in Rio de Janeiro State (RJ). Here, we reviewed seven articles we published between 2018 and 2022. This study had two phases. The quantitative phase where frequency was used to describe patient characteristics and regressions were used to evaluate the relationship between treatment outcomes and covariates. The qualitative phase where content analysis of the narratives was performed. Secondary (electronic systems) and primary (semi-structured interviews) data were used. We analyzed 2,269 MDR-TB, 58.1% MDR-TB, and 18.6% extensively drug-resistant TB (XDR-TB) cases, of which 44.3% exhibited unfavorable outcomes. Among the 140 patients with XDR-TB, 29.3% had not undergone prior treatment for MDR-TB. The primary resistance rate in MDR-TB cases was 14.7%, revealing significant demographic and clinical disparities, particularly among women, Caucasians, and those with higher education levels. The number of cases increased from 7.69% in 2000 to 38.42% in 2018, showing an increasing trend (AAPC = 9.4; 95% CI 1.4−18.0, p < 0.001), with 25.4% underreporting. A qualitative study confirmed a high proportion of primary resistance (64.5%) and delayed diagnosis of MDR-TB. In RJ, the diagnostic and therapeutic cascade of MDR-TB must be improved using molecular tests to achieve an early diagnosis of resistance and immediate initiation of appropriate treatment, promote social protection for MDR/XDR-TB patients and their families, enhance TB contact tracing, establish and monitor hospital surveillance centers integrated with Primary Care, and unify various information systems through interoperability for better integration. multidrugresistant multidrug resistant MDRTB MDR (MDR-TB RJ. RJ . (RJ) Here 201 2022 phases covariates performed electronic semistructured semi structured interviews 2269 2 269 2,26 MDRTB, TB, 581 58 1 58.1 186 18 6 18.6 drugresistant drug XDRTB XDR (XDR-TB 443 44 3 44.3 14 XDRTB, XDR-TB 293 29 29.3 MDRTB. TB. 147 7 14.7% disparities women Caucasians levels 769 69 7.69 200 3842 38 42 38.42 AAPC 9.4 94 9 4 95 14180 0 1.4−18.0 0.001, 0001 0.001 , 001 0.001) 254 25 25.4 underreporting 64.5% 645 64 5 (64.5% MDR/XDRTB MDRXDRTB MDR/XDR families tracing Care integration (RJ 20 202 226 26 2,2 58. 18. 44. 29. 14.7 76 7.6 384 38.4 9. 1418 1.4−18. 000 0.00 00 25. 64.5 (64.5 MDRXDR 22 2, 14. 7. 38. 141 1.4−18 0.0 64. (64. 1.4−1 0. (64 1.4− (6 1.4 ( 1.

ABSTRACT OBJECTIVE To understand patients’ narratives about the barriers they faced in the diagnosis and treatment of multidrug-resistant tuberculosis, and their consequences in Rio de Janeiro State, Brazil. METHODS This is a qualitative cross-sectional study with non-probabilistic sampling. A theoretical saturation criterion was considered for composing the number of interviewees. Semi-structured interviews were conducted from August to December 2019 with 31 patients undergoing treatment for multidrug-resistant tuberculosis at an outpatient referral center in Rio de Janeiro. Data were transcribed and processed with the aid of the NVIVO software. Interviews were evaluated by content analysis, and their themes, cross-referenced with participants’ characterization data. RESULTS Our main findings were: a) participants show a high proportion of primary drug resistance, b) patients experience delays in the diagnosis and effective treatment of multidrug-resistant tuberculosis ; c) healthcare providers fail to value or seek the diagnosis of drug-resistant tuberculosis, thus beginning the inadequate treatment for drug-susceptible tuberculosis, d) primary health units show low report rates of active case-finding and contact monitoring, and e) patients show poor knowledge about the disease. CONCLUSIONS We need to improve referral systems, and access to the diagnosis and effective treatment of multidrug-resistant tuberculosis; conduct an active investigation of contacts; intensify the training of healthcare providers, in collaboration with medical and nursing schools, in both public and private systems; and promote campaigns to educate the population on tuberculosis signs and symptoms.

ABSTRACT OBJECTIVE To understand patients’ narratives about the barriers they faced in the diagnosis and treatment of multidrug-resistant tuberculosis, and their consequences in Rio de Janeiro State, Brazil. METHODS This is a qualitative cross-sectional study with non-probabilistic sampling. A theoretical saturation criterion was considered for composing the number of interviewees. Semi-structured interviews were conducted from August to December 2019 with 31 patients undergoing treatment for multidrug-resistant tuberculosis at an outpatient referral center in Rio de Janeiro. Data were transcribed and processed with the aid of the NVIVO software. Interviews were evaluated by content analysis, and their themes, cross-referenced with participants’ characterization data. RESULTS Our main findings were: a) participants show a high proportion of primary drug resistance, b) patients experience delays in the diagnosis and effective treatment of multidrug-resistant tuberculosis ; c) healthcare providers fail to value or seek the diagnosis of drug-resistant tuberculosis, thus beginning the inadequate treatment for drug-susceptible tuberculosis, d) primary health units show low report rates of active case-finding and contact monitoring, and e) patients show poor knowledge about the disease. CONCLUSIONS We need to improve referral systems, and access to the diagnosis and effective treatment of multidrug-resistant tuberculosis; conduct an active investigation of contacts; intensify the training of healthcare providers, in collaboration with medical and nursing schools, in both public and private systems; and promote campaigns to educate the population on tuberculosis signs and symptoms.

Abstract INTRODUCTION: We analyzed the trends in primary multidrug-resistant tuberculosis (MDR-TB). METHODS: We performed a time series analysis of primary MDR-TB cases reported in the State of Rio de Janeiro (RJ) during 2000-2019. The annual percent change and the average annual percentage change (AAPC) were computed using joinpoint regression analysis. RESULTS: The percentage of cases increased from 7.69% in 2000 to 38.42% in 2018. We observed an upward trend during this period (AAPC = 9.4; 95% confidence interval 1.4-18.0, p < 0.001). CONCLUSIONS: The trend indicates the increasing occurrence of MDR-TB transmission sources in RJ during 2000-2019.

Neste estudo, estimou-se a proporção e os fatores associados à subnotificação da tuberculose multirresistente (TB-MDR) no Estado do Rio de Janeiro, Brasil, assim como a proporção de óbitos nesse grupo. Realizou-se um estudo de coorte retrospectiva, utilizando a técnica de relacionamento probabilístico entre sistemas de informação. Os casos com resultado do teste de sensibilidade às drogas (TSA) com padrão TB-MDR registrados no Sistema Gerenciador de Ambiente Laboratorial (GAL), no período 2010 a 2017, foram relacionados com casos notificados no Sistema de Tratamentos Especiais de Tuberculose (SITETB). Regressões logísticas simples e múltipla foram realizadas para estimar os fatores associados à subnotificação. Para verificar o óbito, foi realizada a busca dos casos no Sistema de Informações sobre Mortalidade (SIM) e no portal do Tribunal de Justiça do Estado do Rio de Janeiro. Dos 651 casos TB-MDR no GAL, 165 não haviam sido notificados no SITETB, perfazendo uma subnotificação de 25,4% na amostra. Entre os casos subnotificados, 61 (37%) foram encontrados nos registros de óbito. Na análise múltipla, ter o exame solicitado por um hospital (OR = 2,86; IC95%: 1,72-4,73) esteve associado à subnotificação. No geral, o tempo médio entre a solicitação do exame e a liberação do resultado foi de 113 dias. Entre os casos notificados, o tempo médio entre a solicitação do exame e o início do tratamento foi de 169 dias. Diante disso, é urgente fortalecer as ações de vigilância epidemiológica na TB-MDR, estabelecer e monitorar núcleos de vigilância hospitalar e as rotinas de notificação de TB nos hospitais, rever etapas operacionais, além de unificar os diversos sistemas de informação tornando-os mais ágeis e integrados.

This study estimated the proportion of underreporting of multidrug-resistant tuberculosis (MDR-TB) and associated factors in the State of Rio de Janeiro, Brazil, as well as the proportion of deaths in this group. A retrospective cohort study was conducted using probabilistic database linkage. Cases with the results of the drug sensitivity test (DST) with MDR-TB pattern recorded in the Laboratory Environment Management System (GAL) from 2010 to 2017 were linked to cases reported to the Special TB Treatments System (SITETB). Simple and multiple logistic regressions were performed to estimate factors associated with underreporting. Death was verified by search for cases in the Mortality Information System (SIM) and in the portal of the Rio de Janeiro State Court of Justice. Of the 651 cases of MDR-TB in the GAL, 165 had not been reported to the SITETB, meaning an underreporting rate of 25.4% in the sample. Among the unreported cases, 61 (37%) were identified in the death records. In the multiple analysis, the fact that the test was ordered by a hospital (OR = 2.86; 95%CI: 1.72-4.73) was associated with underreporting. Overall, the mean turnaround time between ordering the test and releasing the result was 113 days. Among reported cases, the mean time between ordering the test and initiating treatment was 169 days. The results underline the urgent need to strengthen epidemiological surveillance activities for MDR-TB, establish and monitor hospital surveillance centers and routine TB reporting in hospitals, review operational stages, and integrate various information systems to make them more agile and integrated.

En este estudio se estimó la proporción y los factores asociados a la subnotificación de la tuberculosis resistente a múltiples fármacos (TB-MDR) en el Estado de Río de Janeiro, Brasil, así como la proporción de óbitos en ese grupo. Se realizó un estudio de cohorte retrospectiva, utilizando la técnica de relación probabilística entre sistemas de información. Los casos con resultado del test de sensibilidad a las drogas (TSA) con patrón TB-MDR, registrados en el Sistema Gerenciador de Ambiente Laboratorial (GAL), en el período 2010 a 2017, se relacionaron con casos notificados en el Sistema de Tratamientos Especiales de Tuberculosis (SITETB). Se realizaron regresiones logísticas simples y múltiples para estimar los factores asociados a la subnotificación. Para verificar el óbito, se realizó la búsqueda de los casos en el Sistema de Información sobre Mortalidad (SIM) y en el portal del Tribunal de Justicia del Estado de Río de Janeiro. De los 651 casos TB-MDR en el GAL, 165 no habían sido notificados en el SITETB, lo que equivale a una subnotificación de un 25,4% en la muestra. Entre los casos subnotificados, 61 (37%) se encontraron en los registros de óbito. En el análisis múltiple, que el examen haya sido solicitado por un hospital (OR = 2,86; IC95%: 1,72-4,73) estuvo asociado a la subnotificación. En general, el tiempo medio entre la solicitud del examen y la llegada del resultado fue de 113 días. Entre los casos notificados, el tiempo medio entre la solicitud del examen y el inicio del tratamiento fue de 169 días. Ante esto, es urgente fortalecer las acciones de vigilancia epidemiológica en la TB-MDR, establecer y supervisar núcleos de vigilancia hospitalaria y las rutinas de notificación de TB en los hospitales, revisar etapas operacionales, además de unificar los diversos sistemas de información haciéndolos más ágiles e integrados.

Neste estudo, estimou-se a proporção e os fatores associados à subnotificação da tuberculose multirresistente (TB-MDR) no Estado do Rio de Janeiro, Brasil, assim como a proporção de óbitos nesse grupo. Realizou-se um estudo de coorte retrospectiva, utilizando a técnica de relacionamento probabilístico entre sistemas de informação. Os casos com resultado do teste de sensibilidade às drogas (TSA) com padrão TB-MDR registrados no Sistema Gerenciador de Ambiente Laboratorial (GAL), no período 2010 a 2017, foram relacionados com casos notificados no Sistema de Tratamentos Especiais de Tuberculose (SITETB). Regressões logísticas simples e múltipla foram realizadas para estimar os fatores associados à subnotificação. Para verificar o óbito, foi realizada a busca dos casos no Sistema de Informações sobre Mortalidade (SIM) e no portal do Tribunal de Justiça do Estado do Rio de Janeiro. Dos 651 casos TB-MDR no GAL, 165 não haviam sido notificados no SITETB, perfazendo uma subnotificação de 25,4% na amostra. Entre os casos subnotificados, 61 (37%) foram encontrados nos registros de óbito. Na análise múltipla, ter o exame solicitado por um hospital (OR = 2,86; IC95%: 1,72-4,73) esteve associado à subnotificação. No geral, o tempo médio entre a solicitação do exame e a liberação do resultado foi de 113 dias. Entre os casos notificados, o tempo médio entre a solicitação do exame e o início do tratamento foi de 169 dias. Diante disso, é urgente fortalecer as ações de vigilância epidemiológica na TB-MDR, estabelecer e monitorar núcleos de vigilância hospitalar e as rotinas de notificação de TB nos hospitais, rever etapas operacionais, além de unificar os diversos sistemas de informação tornando-os mais ágeis e integrados.

This study estimated the proportion of underreporting of multidrug-resistant tuberculosis (MDR-TB) and associated factors in the State of Rio de Janeiro, Brazil, as well as the proportion of deaths in this group. A retrospective cohort study was conducted using probabilistic database linkage. Cases with the results of the drug sensitivity test (DST) with MDR-TB pattern recorded in the Laboratory Environment Management System (GAL) from 2010 to 2017 were linked to cases reported to the Special TB Treatments System (SITETB). Simple and multiple logistic regressions were performed to estimate factors associated with underreporting. Death was verified by search for cases in the Mortality Information System (SIM) and in the portal of the Rio de Janeiro State Court of Justice. Of the 651 cases of MDR-TB in the GAL, 165 had not been reported to the SITETB, meaning an underreporting rate of 25.4% in the sample. Among the unreported cases, 61 (37%) were identified in the death records. In the multiple analysis, the fact that the test was ordered by a hospital (OR = 2.86; 95%CI: 1.72-4.73) was associated with underreporting. Overall, the mean turnaround time between ordering the test and releasing the result was 113 days. Among reported cases, the mean time between ordering the test and initiating treatment was 169 days. The results underline the urgent need to strengthen epidemiological surveillance activities for MDR-TB, establish and monitor hospital surveillance centers and routine TB reporting in hospitals, review operational stages, and integrate various information systems to make them more agile and integrated.

En este estudio se estimó la proporción y los factores asociados a la subnotificación de la tuberculosis resistente a múltiples fármacos (TB-MDR) en el Estado de Río de Janeiro, Brasil, así como la proporción de óbitos en ese grupo. Se realizó un estudio de cohorte retrospectiva, utilizando la técnica de relación probabilística entre sistemas de información. Los casos con resultado del test de sensibilidad a las drogas (TSA) con patrón TB-MDR, registrados en el Sistema Gerenciador de Ambiente Laboratorial (GAL), en el período 2010 a 2017, se relacionaron con casos notificados en el Sistema de Tratamientos Especiales de Tuberculosis (SITETB). Se realizaron regresiones logísticas simples y múltiples para estimar los factores asociados a la subnotificación. Para verificar el óbito, se realizó la búsqueda de los casos en el Sistema de Información sobre Mortalidad (SIM) y en el portal del Tribunal de Justicia del Estado de Río de Janeiro. De los 651 casos TB-MDR en el GAL, 165 no habían sido notificados en el SITETB, lo que equivale a una subnotificación de un 25,4% en la muestra. Entre los casos subnotificados, 61 (37%) se encontraron en los registros de óbito. En el análisis múltiple, que el examen haya sido solicitado por un hospital (OR = 2,86; IC95%: 1,72-4,73) estuvo asociado a la subnotificación. En general, el tiempo medio entre la solicitud del examen y la llegada del resultado fue de 113 días. Entre los casos notificados, el tiempo medio entre la solicitud del examen y el inicio del tratamiento fue de 169 días. Ante esto, es urgente fortalecer las acciones de vigilancia epidemiológica en la TB-MDR, establecer y supervisar núcleos de vigilancia hospitalaria y las rutinas de notificación de TB en los hospitales, revisar etapas operacionales, además de unificar los diversos sistemas de información haciéndolos más ágiles e integrados.

Resumo Introdução: O aumento da TB resistente aos medicamentos ameaça o progresso global em direção às metas de eliminação da TB e representa um grande desafio para pacientes, profissionais de saúde e serviços de saúde. O tratamento da tuberculose multirresistente (TB-MDR) pode durar quase dois anos, sendo mais caro, mais tóxico e menos eficaz do que a TB em bacilos sensíveis a medicamentos. Este estudo tem como objetivo analisar as narrativas dos pacientes sobre os desafios que enfrentam e identificar os fatores de suporte oferecidos durante o tratamento num distrito de Portugal. Métodos: Foram realizadas entrevistas semiestruturadas com pacientes em tratamento para tuberculose multirresistente. As entre vistas foram codificadas por meio de análise temática. Foram gravadas em áudio, transcritas e transportadas para o NVivo versão 12 para e codificação de dados. Resultados: Os resultados revelaram que depressão, discriminação social e os efeitos colaterais dos medicamentos são os principais desafios enfrentados pelos pacientes com TB-MDR. Um bom relacionamento dos pacientes com a equipa de saúde, apoio emocional e tratamento supervisionado destacam-se como fatores que geram melhor adesão e sucesso no tratamento. Conclusão: Além das modernas técnicas de diagnóstico e novos tratamentos, a tuberculose multirresistente pode ser combatida enfatizando-se o atendimento e as necessidades do paciente. Assim, sugerimos que o programa de tuberculose de Lisboa adote as seguintes medidas: possibilitar à equipa de saúde o reconhecimento precoce dos sintomas de depressão, aumentar a conscientização pública sobre a doença, ampliar a equipa multidisciplinar e ampliar as possibilidades de apoio social individualizado aos pacientes. Descritores: Tuberculose Multidroga Resistente; Pesquisa Qualitativa; Assistência ao Paciente; Apoio Social.

Abstract Introduction: The increase in drug-resistant tuberculosis (TB) threatens global progress in eliminating TB, and constitutes a major challenge for patients, health-care workers and health services. Treatment for multidrug-resistant TB (MDR TB) can last almost 2 years, and is more expensive, more toxic, and less effective than treating TB caused by drug-sensitive bacilli. This study aims to analyze patients’ narratives about the challenges they face during MDR-TB treatment and identify the support factors that help patients being treated in the most populous district of Portugal. Methods: Semi-structured interviews were conducted with patients being treated for MDR-TB. The interviews were coded using thematic analysis. They were audio-recorded, transcribed, and transported into NVivo v12 for data management and coding. Results: Depression, social discrimination, and the side effects of drugs are the main challenges faced by patients with MDR-TB. A good relationship of the patients with the health team, emotional support, and supervised treatment stand out as the factors that generate better adherence and treatment success. Conclusion: In addition to modern diagnostic techniques and new treatments, MDR-TB can be fought by focusing on the care and needs of patients. We suggest that the Lisbon Tuberculosis Program adopts the following measures: build the health-care team’s capacity to identify symptoms of depression early, increase public awareness of the disease, expand the multidisciplinary team, and expand the options for individualized social support for patients.