Contributory Factors to Caregiver Burden in Parkinson's Disease.

Background: Although there is growing recognition of the relevancy of informal caregivers there is scarce information on the contributory factors of caregiver burden in Parkinson's Disease (PD). Objective: To identify the main associated factors to caregivers' burden in people caring for a person with PD. Methods: We analyzed the data set from a multinational online survey the Parkinson's real-world impact assesSMent (PRISM) focusing on medication use, comorbidities, health-related quality of life, relationship changes and the use of healthcare and supportive care resources by people with PD and their carers. Structured questionnaires including the Parkinson's disease quality of life questionnaire (PDQ-39), non-motor symptoms questionnaire (NMSQuest) and the Questionnaire for impulsive-compulsive disorder in Parkinson's disease (QUIP) were applied. Caregiver burden was assessed by the Zarit Burden Interview (ZBI). Results: In a cohort of 245 dyads (patient and respective caregiver), caregivers reported a mild to moderate burden. Carers' perception of PD impact in partnership, financial burden, hours of care, patient's age, hypersexuality and health-related quality of life (HRQoL) were found to be significant contributory factors to caregiver burden. Taken together these variables explained 66.8% of the variance in the Interpretation of the ZBI total score. Conclusions: Caring for a person with PD entails substantial burden, particularly when the caregiver perceives greater changes in partnership dynamics, dedicates more time to caregiving tasks, has financial burden, and when the patient is older, reports worst HRQoL and has sexual compulsive urges.

The translation into Portuguese of the 11th International Statistical Classification of Diseases and Related Health Problems (ICD-11). / Tradução para a língua portuguesa da 11a Classificação Estatística Internacional de Doenças e Problemas Relacionados à Saúde (CID-11).

The 11th International Statistical Classification of Diseases and Related Health Problems (ICD-11) represents an advance in the focus on knowledge and new disease approaches. The ICD is used for different practical purposes, enabling assessment of progress in the global health agenda, resource allocation, patient safety, health care qualification, and health insurance reimbursement. It is entirely digital, with technological resources that allow periodic updating. In early 2022, ICD-11 entered into official force, having been made available in several official ICD languages such as Arabic, Chinese, Spanish, French, and English. The translation process into Brazilian Portuguese, coordinated by the Federal University of Minas Gerais (UFMG), with support from the Brazilian Ministry of Health (MS) and PAHO/WHO, is presented here. The work was carried out in three stages between August 2021 and December 2022 by translators with different backgrounds: medical specialists (49), physiotherapists (1), pharmacologists (1), and dentists (1). This methodological article aims to broaden the discussion of perspectives on implementing the ICD-11 in Brazil and build an opportunity for its adaptation and use by other Portuguese-speaking countries.

A 11a Classificação Estatística Internacional de Doenças e Problemas Relacionados à Saúde representa um avanço no enfoque do conhecimento e em novas abordagens das doenças. A Classificação Estatística Internacional de Doenças e Problemas Relacionados à Saúde é utilizada para diferentes finalidades práticas, possibilitando avaliação do avanço da agenda de saúde global, alocação de recursos, segurança do paciente, qualificação da assistência à saúde e reembolso de seguros de saúde. É inteiramente digital, com recursos tecnológicos que permitem sua atualização periódica. No início de 2022, a 11a Classificação Estatística Internacional de Doenças e Problemas Relacionados à Saúde entrou em vigência oficial, tendo sido disponibilizada em vários de seus idiomas oficiais, como o árabe, chinês, espanhol, francês e inglês. Apresenta-se aqui o processo de tradução para a língua portuguesa em uso no Brasil, coordenado pela Universidade Federal de Minas Gerais, com apoio do Ministério da Saúde do Brasil e da Organização Pan-Americana da Saúde/Organização Mundial da Saúde. O trabalho foi realizado em três etapas entre agosto de 2021 e dezembro de 2022 por tradutores com diferentes formações: médicos especialistas (49), fisioterapeuta (1), farmacologista (1) e odontologista (1). Com este artigo metodológico, almeja-se ampliar a discussão de perspectivas para implementação da 11a Classificação Estatística Internacional de Doenças e Problemas Relacionados à Saúde no Brasil e construir uma oportunidade para sua adaptação e uso por outros países de língua oficial portuguesa.

Natural history of familial cerebral cavernous malformation syndrome in children: a multicenter cohort study.

PURPOSE: There is limited data concerning neuroimaging findings and longitudinal evaluation of familial cerebral cavernous malformations (FCCM) in children. Our aim was to study the natural history of pediatric FCCM, with an emphasis on symptomatic hemorrhagic events and associated clinical and imaging risk factors. METHODS: We retrospectively reviewed all children diagnosed with FCCM in four tertiary pediatric hospitals between January 2010 and March 2022. Subjects with first available brain MRI and [Formula: see text] 3 months of clinical follow-up were included. Neuroimaging studies were reviewed, and clinical data collected. Annual symptomatic hemorrhage risk rates and cumulative risks were calculated using survival analysis and predictors of symptomatic hemorrhagic identified using regression analysis. RESULTS: Forty-one children (53.7% males) were included, of whom 15 (36.3%) presenting with symptomatic hemorrhage. Seven symptomatic hemorrhages occurred during 140.5 person-years of follow-up, yielding a 5-year annual hemorrhage rate of 5.0% per person-year. The 1-, 2-, and 5-year cumulative risks of symptomatic hemorrhage were 7.3%, 14.6%, and 17.1%, respectively. The latter was higher in children with prior symptomatic hemorrhage (33.3%), CCM2 genotype (33.3%), and positive family history (20.7%). Number of brainstem (adjusted hazard ratio [HR] = 1.37, P = 0.005) and posterior fossa (adjusted HR = 1.64, P = 0.004) CCM at first brain MRI were significant independent predictors of prospective symptomatic hemorrhage. CONCLUSION: The 5-year annual and cumulative symptomatic hemorrhagic risk in our pediatric FCCM cohort equals the overall risk described in children and adults with all types of CCM. Imaging features at first brain MRI may help to predict potential symptomatic hemorrhage at 5-year follow-up.

Tradução para a língua portuguesa da 11a Classificação Estatística Internacional de Doenças e Problemas Relacionados à Saúde (CID-11) / The translation into Portuguese of the 11th International Statistical Classification of Diseases and Related Health Problems (ICD-11)

RESUMO A 11a Classificação Estatística Internacional de Doenças e Problemas Relacionados à Saúde representa um avanço no enfoque do conhecimento e em novas abordagens das doenças. A Classificação Estatística Internacional de Doenças e Problemas Relacionados à Saúde é utilizada para diferentes finalidades práticas, possibilitando avaliação do avanço da agenda de saúde global, alocação de recursos, segurança do paciente, qualificação da assistência à saúde e reembolso de seguros de saúde. É inteiramente digital, com recursos tecnológicos que permitem sua atualização periódica. No início de 2022, a 11a Classificação Estatística Internacional de Doenças e Problemas Relacionados à Saúde entrou em vigência oficial, tendo sido disponibilizada em vários de seus idiomas oficiais, como o árabe, chinês, espanhol, francês e inglês. Apresenta-se aqui o processo de tradução para a língua portuguesa em uso no Brasil, coordenado pela Universidade Federal de Minas Gerais, com apoio do Ministério da Saúde do Brasil e da Organização Pan-Americana da Saúde/Organização Mundial da Saúde. O trabalho foi realizado em três etapas entre agosto de 2021 e dezembro de 2022 por tradutores com diferentes formações: médicos especialistas (49), fisioterapeuta (1), farmacologista (1) e odontologista (1). Com este artigo metodológico, almeja-se ampliar a discussão de perspectivas para implementação da 11a Classificação Estatística Internacional de Doenças e Problemas Relacionados à Saúde no Brasil e construir uma oportunidade para sua adaptação e uso por outros países de língua oficial portuguesa.

ABSTRACT The 11th International Statistical Classification of Diseases and Related Health Problems (ICD-11) represents an advance in the focus on knowledge and new disease approaches. The ICD is used for different practical purposes, enabling assessment of progress in the global health agenda, resource allocation, patient safety, health care qualification, and health insurance reimbursement. It is entirely digital, with technological resources that allow periodic updating. In early 2022, ICD-11 entered into official force, having been made available in several official ICD languages such as Arabic, Chinese, Spanish, French, and English. The translation process into Brazilian Portuguese, coordinated by the Federal University of Minas Gerais (UFMG), with support from the Brazilian Ministry of Health (MS) and PAHO/WHO, is presented here. The work was carried out in three stages between August 2021 and December 2022 by translators with different backgrounds: medical specialists (49), physiotherapists (1), pharmacologists (1), and dentists (1). This methodological article aims to broaden the discussion of perspectives on implementing the ICD-11 in Brazil and build an opportunity for its adaptation and use by other Portuguese-speaking countries.

Excess Mortality due to natural causes among whites and blacks during the COVID-19 pandemic in Brazil.

INTRODUCTION: Excess Mortality by all causes considers deaths directly related to COVID-19 and those attributed to conditions caused by the pandemic. When stratified by social dimensions, such as race/color, it allows for the evaluation of more vulnerable populations. The study estimated the excess mortality by natural causes, separating the white and black populations in 2020. METHODS: Public civil registration data on deaths observed in 2020, corrected for under registration, were used. The expected number of deaths was estimated based on the mortality rates observed in 2019, applied to the estimated population in 2020. The difference between the values expected and observed and the proportion of excess was considered the excess mortality. RESULTS: The present study found an excess of 270,321 deaths (22.2% above the expected) in 2020. Every state of Brazil reported deaths above the corresponding expected figure. The excess was higher for men (25.2%) than for women (19.0%). Blacks showed an excess of 27.8%, as compared to whites at 17.6%. In both sexes and all age groups, excess was higher in the black population, especially in the South, Southeast, and Midwest regions. São Paulo, the largest in population number, had twice as much excess death in the black population (25.1%) than in the white population (11.5%). CONCLUSIONS: The present study showed racial disparities in excess mortality during the COVID-19 pandemic in Brazil. The higher excess found for the black suggests an intrinsic relationship with the socioeconomic situation, further exposing the Brazilian reality, in which social and structural inequality is evident.

[Assessment of the coordination of primary healthcare: comparison of PMAQ-AB (Brazil) and international references]. / Avaliação da coordenação do cuidado na atenção primária à saúde: comparando o PMAQ-AB (Brasil) e referências internacionais.

This study aimed to compare the results obtained with the coordination of care through the Brazilian National Program for Improvement of Access and Quality of Basic Care (PMAQ-AB), with the parameters adopted by the Care Coordination Measures Atlas and the European Observatory on Health Systems and Policies. A cross-sectional study was performed using the dataset from the third cycle of the PMAQ-AB. Three typologies of coordination of care were created: PMAQ-AB, Atlas, and Observatory. Chi-square test was applied to compare proportions and Kruskal-Wallis and Nemenyi tests to verify and identify potential differences between the typologies. Significance was set at 5%. In all, 35,350 teams were assessed that performed some activity in care coordination. A significant difference was observed (p < 0.001) between levels of coordination, with a higher percentage between the high and medium levels in the three instruments, PMAQ-AB (56.07% and 38.35%), Atlas (52.63% and 40.66%), and Observatory (44.82% and 43.98%). In the comparison of the indicators, there was a significant difference (p < 0.001) between the typologies. For Brazil, in the PMAQ-AB typology, all the strata displayed a higher percentage between the high and medium levels; in the Atlas, stratum 1 stood out in the medium level (43.81%); the high level predominated in the Observatory. In the comparison of the indicators by strata, at least one stratum differed from the others (p < 0.001). Number 6 differed from the others (p < 0.001), and number 1 differed from all of them (p < 0.001) except number 2 (p > 0.05). The levels of coordination of care differed according to the instruments used. High and medium levels were identified, showing the need for additional studies.

O objetivo deste estudo foi comparar os resultados obtidos para a coordenação do cuidado a partir do Programa Nacional de Melhoria do Acesso e da Qualidade da Atenção Básica (PMAQ-AB), com os parâmetros adotados pelo Atlas de Medidas de Coordenação do Cuidado e pelo Observatório Europeu de Políticas e Sistemas de Saúde. Foi realizado estudo transversal, com base no banco de dados do 3º ciclo do PMAQ-AB. Foram criadas três tipologias de coordenação do cuidado: PMAQ-AB, Atlas e Observatório. O teste qui-quadrado foi aplicado para comparar as proporções; os testes de Kruskal-Wallis e de Nemenyi para verificar e identificar eventuais diferenças entre as tipologias. O nível de significância foi de 5%. Foram avaliadas 35.350 equipes que realizaram alguma atividade de coordenação do cuidado. Observou-se diferença significativa (p < 0,001), entre os níveis de coordenação, com maior percentual entre o nível alto e médio nos três instrumentos, PMAQ-AB (56,07% e 38,35%), Atlas (52,63% e 40,66%) e o Observatório (44,82% e 43,98%). Na comparação dos indicadores, houve diferença significativa (p < 0,001) entre as tipologias. Para o Brasil, na tipologia PMAQ-AB, todos os estratos exibiram maior percentual entre o nível alto e médio; no Atlas, o estrato 1 destacou-se no nível médio (43,81%) e, no Observatório, predominou o nível alto. Na comparação dos indicadores por estratos, pelo menos um estrato diferiu dos demais (p < 0,001). O 6 se distinguiu dos demais (p < 0,001), e o 1 diferiu de todos (p < 0,001), exceto do 2 (p > 0,05). Os níveis de coordenação do cuidado diferenciaram-se entre os instrumentos utilizados. Altos e médios níveis foram identificados, demonstrando a necessidade de estudos adicionais.

El objetivo de este estudio fue comparar los resultados obtenidos para la coordinación del cuidado, a partir del Programa Nacional de Mejoría de Acceso y Calidad de la Atención Básica (PMAQ-AB), con los parámetros adoptados por el Atlas de Medidas de Coordinación del Cuidado y por el Observatorio Europeo de Políticas y Sistemas de Salud. Se realizó un estudio transversal, basado en el banco de datos del 3er ciclo del PMAQ-AB. Se crearon tres tipologías de coordinación del cuidado: PMAQ-AB, Atlas y Observatorio. El test de chi-cuadrado se aplicó para comparar las proporciones, el test de Kruskal-Wallis y el de Nemenyi para verificar e identificar eventuales diferencias entre las tipologías. El nivel de significancia fue de 5%. Se evaluaron a 35.350 equipos que realizaron alguna actividad de coordinación del cuidado. Se observó una diferencia significativa (p < 0,001), entre los niveles de coordinación, con mayor porcentaje entre el nivel alto y medio en los tres instrumentos, PMAQ-AB (56,07% y 38,35%), Atlas (52,63% y 40,66%) y el Observatorio (44,82% y 43,98%). En la comparación de los indicadores, hubo una diferencia significativa (p < 0,001) entre las tipologías. Para Brasil, en la tipología PMAQ-AB todos los estratos expusieron un mayor porcentaje entre el nivel alto y medio; en el Atlas, el estrato 1 se destacó en el nivel medio (43,81%) y, en el Observatorio, predominó el nivel alto. En la comparación de los indicadores por estratos, por lo menos un estrato difirió de los demás (p < 0,001). El 6 se distinguió de los demás (p < 0,001), y el 1 difirió de todos (p < 0,001), excepto del 2 (p > 0,05). Los niveles de coordinación del cuidado se diferenciaron entre los instrumentos utilizados. Se identificaron niveles altos y medios, demostrando la necesidad de estudios adicionales.

Measuring misclassification of Covid-19 as garbage codes: Results of investigating 1,365 deaths and implications for vital statistics in Brazil.

The purpose of this article is to quantify the amount of misclassification of the Coronavirus Disease-2019 (COVID-19) mortality occurring in hospitals and other health facilities in selected cities in Brazil, discuss potential factors contributing to this misclassification, and consider the implications for vital statistics. Hospital deaths assigned to causes classified as garbage code (GC) COVID-related cases (severe acute respiratory syndrome, pneumonia unspecified, sepsis, respiratory failure and ill-defined causes) were selected in three Brazilian state capitals. Data from medical charts and forensic reports were extracted from standard forms and analyzed by study physicians who re-assigned the underlying cause based on standardized criteria. Descriptive statistical analysis was performed and the potential impact in vital statistics in the country was also evaluated. Among 1,365 investigated deaths due to GC-COVID-related causes, COVID-19 was detected in 17.3% in the age group 0-59 years and 25.5% deaths in 60 years and over. These GCs rose substantially in 2020 in the country and were responsible for 211,611 registered deaths. Applying observed proportions by age, location and specific GC-COVID-related cause to national data, there would be an increase of 37,163 cases in the total of COVID-19 deaths, higher in the elderly. In conclusion, important undercount of deaths from COVID-19 among GC-COVID-related causes was detected in three selected capitals of Brazil. After extrapolating the study results for national GC-COVID-related deaths we infer that the burden of COVID-19 disease in Brazil in official vital statistics was probably under estimated by at least 18% in the country in 2020.

Coordenação do cuidado na Atenção Primária: gravidez, câncer de colo uterino e de mama como marcadores / Pregnancy, cervical cancer and beast cancer as markers of primary care coordination / Coordinación del cuidado en la atención primaria: embarazo, cáncer de cuello uterino y de mama como marcadores

O estudo buscou compreender a coordenação do cuidado pela Atenção Primária à Saúde para casos de gestação, câncer de mama e de colo uterino. O atributo foi entendido como a responsabilidade que os profissionais das equipes de Saúde da Família (eSF) têm em coordenar a atenção prestada aos usuários ao longo da rede de atenção, assumindo o acompanhamento continuado e a identificação de necessidades. De modo geral, foram identificadas ações de coordenação do cuidado mais bem estruturadas nas ações internas em nível primário, sobretudo aquelas de atenção às gestantes. Quando o trabalho de coordenação envolvia a rede, o destaque foi para a ausência da contrarreferência e para a informalidade nos processos de continuidade da atenção.(AU)

The aim of this study was to understand the coordination of primary health care for pregnant women and breast and cervical cancer patients. The attribute was understood as the responsibility family health care workers have for coordinating care delivery, including continuous follow-up and the identification of patient needs. Overall, the findings show that care coordination was better structured at internal primary care level, particularly pregnancy care. When coordination involved the care network, the findings highlight lack of counter-referral and informal processes for the continuity of care.(AU)

El objetivo del estudio fue entender la coordinación del cuidado por parte de la Atención Primaria de la Salud para casos de gestación, cáncer de mama y de cuello uterino. El atributo fue entendido como la responsabilidad que los profesionales de los equipos de salud de la familia tienen para coordinar la atención prestada a los usuarios en la red de atención, asumiendo el acompañamiento continuado y la identificación de necesidades. Por lo general, se identificaron acciones de coordinación del cuidado mejor estructuradas en las acciones internas en el nivel primario, principalmente para aquellas de atención a las gestantes. Cuando el trabajo de coordinación envolvía la red, el destaque fue para la ausencia de la contrarreferencia y para la informalidad en los procesos para la continuidad de la atención.(AU)

Excess Mortality due to natural causes among whites and blacks during the COVID-19 pandemic in Brazil

Abstract INTRODUCTION: Excess Mortality by all causes considers deaths directly related to COVID-19 and those attributed to conditions caused by the pandemic. When stratified by social dimensions, such as race/color, it allows for the evaluation of more vulnerable populations. The study estimated the excess mortality by natural causes, separating the white and black populations in 2020. METHODS Public civil registration data on deaths observed in 2020, corrected for under registration, were used. The expected number of deaths was estimated based on the mortality rates observed in 2019, applied to the estimated population in 2020. The difference between the values expected and observed and the proportion of excess was considered the excess mortality. RESULTS: The present study found an excess of 270,321 deaths (22.2% above the expected) in 2020. Every state of Brazil reported deaths above the corresponding expected figure. The excess was higher for men (25.2%) than for women (19.0%). Blacks showed an excess of 27.8%, as compared to whites at 17.6%. In both sexes and all age groups, excess was higher in the black population, especially in the South, Southeast, and Midwest regions. São Paulo, the largest in population number, had twice as much excess death in the black population (25.1%) than in the white population (11.5%). CONCLUSIONS: The present study showed racial disparities in excess mortality during the COVID-19 pandemic in Brazil. The higher excess found for the black suggests an intrinsic relationship with the socioeconomic situation, further exposing the Brazilian reality, in which social and structural inequality is evident.

Avaliação da coordenação do cuidado na atenção primária à saúde: comparando o PMAQ-AB (Brasil) e referências internacionais / Assessment of the coordination of primary healthcare: comparison of PMAQ-AB (Brazil) and international references / Evaluación de la coordinación del cuidado en la atención primaria en salud: comparando el PMAQ-AB (Brasil) y referencias internacionales

Resumo: O objetivo deste estudo foi comparar os resultados obtidos para a coordenação do cuidado a partir do Programa Nacional de Melhoria do Acesso e da Qualidade da Atenção Básica (PMAQ-AB), com os parâmetros adotados pelo Atlas de Medidas de Coordenação do Cuidado e pelo Observatório Europeu de Políticas e Sistemas de Saúde. Foi realizado estudo transversal, com base no banco de dados do 3º ciclo do PMAQ-AB. Foram criadas três tipologias de coordenação do cuidado: PMAQ-AB, Atlas e Observatório. O teste qui-quadrado foi aplicado para comparar as proporções; os testes de Kruskal-Wallis e de Nemenyi para verificar e identificar eventuais diferenças entre as tipologias. O nível de significância foi de 5%. Foram avaliadas 35.350 equipes que realizaram alguma atividade de coordenação do cuidado. Observou-se diferença significativa (p < 0,001), entre os níveis de coordenação, com maior percentual entre o nível alto e médio nos três instrumentos, PMAQ-AB (56,07% e 38,35%), Atlas (52,63% e 40,66%) e o Observatório (44,82% e 43,98%). Na comparação dos indicadores, houve diferença significativa (p < 0,001) entre as tipologias. Para o Brasil, na tipologia PMAQ-AB, todos os estratos exibiram maior percentual entre o nível alto e médio; no Atlas, o estrato 1 destacou-se no nível médio (43,81%) e, no Observatório, predominou o nível alto. Na comparação dos indicadores por estratos, pelo menos um estrato diferiu dos demais (p < 0,001). O 6 se distinguiu dos demais (p < 0,001), e o 1 diferiu de todos (p < 0,001), exceto do 2 (p > 0,05). Os níveis de coordenação do cuidado diferenciaram-se entre os instrumentos utilizados. Altos e médios níveis foram identificados, demonstrando a necessidade de estudos adicionais.

Abstract: This study aimed to compare the results obtained with the coordination of care through the Brazilian National Program for Improvement of Access and Quality of Basic Care (PMAQ-AB), with the parameters adopted by the Care Coordination Measures Atlas and the European Observatory on Health Systems and Policies. A cross-sectional study was performed using the dataset from the third cycle of the PMAQ-AB. Three typologies of coordination of care were created: PMAQ-AB, Atlas, and Observatory. Chi-square test was applied to compare proportions and Kruskal-Wallis and Nemenyi tests to verify and identify potential differences between the typologies. Significance was set at 5%. In all, 35,350 teams were assessed that performed some activity in care coordination. A significant difference was observed (p < 0.001) between levels of coordination, with a higher percentage between the high and medium levels in the three instruments, PMAQ-AB (56.07% and 38.35%), Atlas (52.63% and 40.66%), and Observatory (44.82% and 43.98%). In the comparison of the indicators, there was a significant difference (p < 0.001) between the typologies. For Brazil, in the PMAQ-AB typology, all the strata displayed a higher percentage between the high and medium levels; in the Atlas, stratum 1 stood out in the medium level (43.81%); the high level predominated in the Observatory. In the comparison of the indicators by strata, at least one stratum differed from the others (p < 0.001). Number 6 differed from the others (p < 0.001), and number 1 differed from all of them (p < 0.001) except number 2 (p > 0.05). The levels of coordination of care differed according to the instruments used. High and medium levels were identified, showing the need for additional studies.

Resumen: El objetivo de este estudio fue comparar los resultados obtenidos para la coordinación del cuidado, a partir del Programa Nacional de Mejoría de Acceso y Calidad de la Atención Básica (PMAQ-AB), con los parámetros adoptados por el Atlas de Medidas de Coordinación del Cuidado y por el Observatorio Europeo de Políticas y Sistemas de Salud. Se realizó un estudio transversal, basado en el banco de datos del 3er ciclo del PMAQ-AB. Se crearon tres tipologías de coordinación del cuidado: PMAQ-AB, Atlas y Observatorio. El test de chi-cuadrado se aplicó para comparar las proporciones, el test de Kruskal-Wallis y el de Nemenyi para verificar e identificar eventuales diferencias entre las tipologías. El nivel de significancia fue de 5%. Se evaluaron a 35.350 equipos que realizaron alguna actividad de coordinación del cuidado. Se observó una diferencia significativa (p < 0,001), entre los niveles de coordinación, con mayor porcentaje entre el nivel alto y medio en los tres instrumentos, PMAQ-AB (56,07% y 38,35%), Atlas (52,63% y 40,66%) y el Observatorio (44,82% y 43,98%). En la comparación de los indicadores, hubo una diferencia significativa (p < 0,001) entre las tipologías. Para Brasil, en la tipología PMAQ-AB todos los estratos expusieron un mayor porcentaje entre el nivel alto y medio; en el Atlas, el estrato 1 se destacó en el nivel medio (43,81%) y, en el Observatorio, predominó el nivel alto. En la comparación de los indicadores por estratos, por lo menos un estrato difirió de los demás (p < 0,001). El 6 se distinguió de los demás (p < 0,001), y el 1 difirió de todos (p < 0,001), excepto del 2 (p > 0,05). Los niveles de coordinación del cuidado se diferenciaron entre los instrumentos utilizados. Se identificaron niveles altos y medios, demostrando la necesidad de estudios adicionales.

Utility of Huntington's Disease Assessments by Disease Stage: Floor/Ceiling Effects.

Introduction: An understanding of the clinimetric properties of clinical assessments, including their constraints, is critical to sound clinical study and trial design. Utilizing data from Enroll-HD-a global, prospective HD observational study and clinical research platform-we examined several well-established HD clinical assessments across all stages of disease for evidence of instrument constraints, specifically floor/ceiling effects, to inform selection of appropriate instruments for use in future studies/trials and identify gaps in instrument utility over the life-course of the disease. Material and Methods: Analyzing publicly available data from 6,614 HD gene-expansion carriers (HDGECs), we grouped participants into deciles based on baseline CAP score, which ranged from 26 to 229. We used descriptive statistics to characterize data distribution for 25 outcome measures (encompassing motor, function, cognition, and psychiatric/behavioral domains) in each CAP decile. A skewness statistic threshold of ±2 was defined a priori to indicate floor/ceiling effects. Results: We found evidence of floor/ceiling effects in the early premanifest stages of disease for most motor and function assessments (e.g., TMS, TFC) and select cognitive tasks (MMSE, Trail Making tests). Other cognitive assessments, and the HADS-SIS scales, performed well ubiquitously, with no evidence of floor/ceiling effects at any disease stage. Floor/ceiling effects were evident at every disease stage for certain assessments, including PBA-s measures. Ceiling effects were apparent for DCL from onset stages onwards, as expected. Discussion: Developing instruments sensitive to subtle differences in performance at the earlier stages of the disease spectrum, particularly in motor and function domains, is warranted.

Incidence of completed suicide and suicide attempts in a global prospective study of Huntington's disease.

BACKGROUND: Risk of death from suicide in Huntington's disease is notably elevated relative to that in the general population, although the incidence within HD populations has not been precisely defined. Robust incidence estimates of suicidal behavior can serve as references for HD therapeutic research and post-marketing surveillance to help evaluate the suicidality risk of novel therapeutics. AIMS: To estimate the incidence rate of completed suicide and suicide attempt in the global, prospective HD cohort study Enroll-HD that records these events per protocol. METHOD: A total of 20 912 participants were available for analysis (HD gene-expansion carriers (HDGECs) n = 15 924; non-HDGECs n = 4988) representing a collective observation period of 53 390 participant-years. Each observed event was subject to clinical review and evaluation. We generated incidence rates (events per 100 000 person-years) for suicides and suicide attempts using all available data, as well as by year of study and geographical region. Proportionate mortality statistics for suicide and respective 95% confidence intervals were also generated. RESULTS: The overall incidence rate of suicide in HDGECs was 72 per 100 000 person-years, and 8 per 100 000 person-years in non-HDGECs. Proportionate mortality attributable to suicide in HDGECs was 4.6%. For suicide attempts, the global overall incidence rate observed in HDGECs was 306-375 per 100 000 person-years, and 23-38 per 100 000 person-years in non-HDGECs. CONCLUSIONS: The incidence estimates calculated here can be used as a reference to help evaluate drug safety and may also be useful in assessing progress in clinical care for HDGECs once therapeutic interventions become widely available.

Kinematic and Clinical Outcomes to Evaluate the Efficacy of a Multidisciplinary Intervention on Functional Mobility in Parkinson's Disease.

Introduction: Functional mobility (FM) is a concept that incorporates the capacity of a person to move independently and safely to accomplish tasks. It has been proposed as a Parkinson's disease (PD) functional and global health outcome. In this study, we aimed to identify which kinematic and clinical outcomes changes better predict FM changes when PD patients are submitted to a specialized multidisciplinary program. Methods: PD patients engaged in a pre-defined specialized multidisciplinary program were assessed at admission and discharge. Change from baseline was calculated for all kinematic and clinical outcomes, and Timed Up and Go (TUG) was defined as the primary outcome for FM. A stepwise multivariate linear regression was performed to identify which outcome measures better predict TUG changes. Results: Twenty-four patients were included in the study. The changes in TUG Cognitive test, supervised step length, and free-living (FL) step time asymmetry were identified as the best predictors of TUG changes. The supervised step length and FL step time asymmetry were able to detect a small to moderate effect of the intervention (d values ranging from -0.26 to 0.42). Conclusions: Our results support the use of kinematic outcome measures to evaluate the efficacy of multidisciplinary interventions on PD FM. The TUG Cognitive, step length, and FL step time asymmetry were identified as having the ability to predict TUG changes. More studies are needed to identify the minimal clinically important difference for step length and FL step time asymmetry in response to a multidisciplinary intervention for PD FM.

Covid Adult Mortality in Brazil: An Analysis of Multiple Causes of Death.

Objective: This study aimed to analyze the chain of events and contributing causes associated with COVID-19 adult mortality (30-69 years old), based on qualified data on CoD from three Brazilian capitals cities, Belo Horizonte, Salvador, and Natal, in 2020. Methods: Data of all deaths among residents in the three capitals in 2020 were provided by these municipalities' routine Mortality Information System (SIM). Mentions B34.2 with the markers U07.1 and U07.2 in the death certificate identified COVID-19 deaths. We used a multiple-cause-of-death approach better to understand the complexity of the morbid process of COVID-19. Conditions that appeared more frequently in the same line or above the COVID-19 mentions in the death certificate were considered a chain-of-event. Conditions that occurred more often after the codes for COVID-19 were considered as contributing. Results: In 2020, 7,029 records from COVID-19 as the underlying cause of death were registered in SIM in the three capitals. Among these, 2,921 (41.6%) were deceased between 30 and 69 years old, representing 17.0% of deaths in this age group. As chain-of-events, the most frequent conditions mentioned were sepsis (33.4%), SARS (32.0%), acute respiratory failure (31.9%), unspecified lower respiratory infections (unspecified pneumonia) (20.1%), and other specified respiratory disorders (14.1%). Hypertension (33.3%), diabetes unspecified type (21.7%), renal failure (12.7%), obesity (9.8%), other chronic kidney diseases (4.9%), and diabetes mellitus type 2 (4.7%) were the most frequent contributing conditions. On average, 3.04 conditions were mentioned in the death certificate besides COVID-19. This average varied according to age, place of death, and capital. Conclusion: The multiple-cause analysis is a powerful tool to better understand the morbid process due to COVID-19 and highlight the importance of chronic non-communicable diseases as contributing conditions.

Cross-cultural adaptation and validation of the Swallowing Disturbance Questionnaire and the Sialorrhea Clinical Scale in Portuguese patients with Parkinson's disease.

INTRODUCTION: To date, no valid outcome measure has been developed in European Portuguese (EP) to evaluate the Parkinsons' Disease (PD) patients' (PwP) reports regarding their swallowing disturbances. OBJECTIVES: The aim of this study was to translate and cross-culturally adapt the Swallowing Disturbance Questionnaire (SDQ) and the Sialorrhea Clinical Scale for PD (SCS-PD) into EP and to determine its clinimetric properties in PwP. MATERIALS AND METHODS: The original English SDQ and SCS-PD versions were cross-culturally adapted following recommendations established in international guidelines. The validation process involved 75 PwP and 65 healthy sex- and age-matched participants. RESULTS: The EP versions of the SDQ and SCS-PD are equivalent to the original versions (content, depth, and scoring). Statistical analyses for the SDQ tool revealed good feasibility (missing data <5%), acceptability (no floor or ceiling effects), excellent internal consistency (Cronbach´s α = 0.95), good construct validity (78.5% revealed large to moderate loadings), moderate convergent validity (r = 0.60), good divergent validity (r = 0.40), good known-groups validity (p-value < .05) and a fair sensitivity and specificity (AUC = 0.700). Statistical analyses for the SCS-PD tool shows good feasibility, reasonable acceptability (floor effect), good internal consistency (Cronbach´s α = 0.85), good construct validity (85.7% showed between large to moderate loadings), good convergent validity (r = 0.78), good divergent validity (r = 0.39), good known groups validity (p-value < .05) and a fair sensitivity and specificity (AUC = 0.704). CONCLUSIONS: The EP versions of the SDQ and SCS-PD maintained the characteristics of the original versions and therefore consistent tools to be used in PwP.

Contribution of community health workers to primary health care performance in Brazil.

OBJECTIVE: To associate the strength of community health workers interventions with primary health care strategies for women's and children's health, diabetes, and hypertension. METHODS: This is a cross-sectional study assessing 29,778 family health teams working in primary health care in Brazil in 2014. The association between community health workers activity levels and primary health care facilities was analyzed using multiple logistic regression. RESULTS: We found higher levels of community health workers activities strongly associated with primary health care practices (OR = 6.88) for those activities targeting hypertension management, followed by children's health (OR = 6.56), and women's health (OR = 6.21). CONCLUSIONS: At a time when Brazil discusses whether community health workers should or should not remain in the same scale-up and skill level as they currently are, our results reinforce the importance of these workers for the care model advocated by the Brazilian Unified Health System.

Comparative analysis of completeness of death registration, adult mortality and life expectancy at birth in Brazil at the subnational level.

BACKGROUND: Estimates of completeness of death registration are crucial to produce estimates of life tables and population projections and to estimate the burden of disease. They are an important step in assessing the quality of data. In the case of subnational data analysis in Brazil, it is important to consider spatial and temporal variation in the quality of mortality data. There are two main sources of data quality evaluation in Brazil, but there are few comparative studies and how they evolve over time. The aim of the paper is to compare and discuss alternative estimates of completeness of death registration, adult mortality (45q15) and life expectancy estimates produced by the National Statistics Office (IBGE), Institute for Health Metrics and Evaluation (IHME), and estimates presented in Queiroz et al. (2017) and Schmertmann and Gonzaga (2018), for 1980 and 2010. METHODS: We provide a descriptive and comparative analysis of aforementioned estimates from four (4) sources of estimates at subnational level (26 states and one Federal District) in Brazil from two different points in time. RESULTS: We found significant differences in estimates that affect both levels and trends of completeness of adult mortality in Brazil and states. IHME and Queiroz et al. (2017) estimates converge by 2010, but there are large differences when compared to estimates from the National Statistics Office (IBGE). Larger differences are observed for less developed states. We have showed that the quality of mortality data in Brazil has improved steadily overtime, but with large regional variations. However, we have observed that IBGE estimates show the lowest levels of completeness for the Northern of the country compared to other estimates. Choice of methods and approaches might lead to very unexpected results. CONCLUSION: We produced a detailed comparative analysis of estimates of completeness of death registration from different sources and discuss the main results and possible explanations for these differences. We have also showed that new improved methods are still needed to study adult mortality in less developed countries and at a subnational level. More comparative studies are important in order to improve quality of estimates in Brazil.

The importance of surveillance in cases of and mortality from the COVID-19 epidemic in Belo Horizonte, Brazil, 2020. / A importância da vigilância de casos e óbitos e a epidemia da COVID-19 em Belo Horizonte, 2020.

OBJECTIVES: This study aims to describe the actions carried out by the epidemiological surveillance system in Belo Horizonte to address the COVID-19 epidemic and the timeless of the data for detecting transmission in 2020. METHODS: The sources of information used by the epidemiological surveillance of the municipality for COVID-19 were identified and the temporal distribution and interval for detection of confirmed cases of the disease were analyzed. RESULTS: The city's epidemiological surveillance uses outpatient, hospital, public and private laboratory notifications as data sources. For reporting COVID-19 cases in official information systems, there is also an active search of laboratory results linked to suspected deaths investigated. From January to April 2020, 1,449 hospitalized cases of COVID-19 were reported, the first case being detected in late February 2020. Of the total 1,025 laboratory samples of cases hospitalized after the 8th epidemiological week, 87 (8.5%) of COVID-19 cases were confirmed. The median time between the onset of symptoms and the release of laboratory results was 12 days for the analyzed period. CONCLUSION: Epidemiological surveillance uses several data sources to monitor and analyze the transmission of COVID-19. The timeliness of this system to detect cases of the disease is compromised by the delay in the release of laboratory results, which has been a considerable challenge for adequate surveillance.

The importance of surveillance in cases and mortality from COVID-19 epidemic in Belo Horizonte, 2020 / A importância da vigilância de casos e óbitos e a epidemia da COVID-19 em Belo Horizonte, 2020

Objectives: This study aims to describe the actions carried out by the epidemiological surveillance system in Belo Horizonte to address the COVID-19 epidemic and the timeless of the data for detecting transmission in 2020. Methods: The sources of information used by the epidemiological surveillance of the municipality for COVID-19 were identified and the temporal distribution and interval for detection of confirmed cases of the disease were analyzed. Results: The city's epidemiological surveillance uses outpatient, hospital, public and private laboratory notifications as data sources. For reporting COVID-19 cases in official information systems, there is also an active search of laboratory results linked to suspected deaths investigated. From January to April 2020, 1,449 hospitalized cases of COVID-19 were reported, the first case being detected in late February 2020. Of the total 1,025 laboratory samples of cases hospitalized after the 8th epidemiological week, 87 (8.5%) of COVID-19 cases were confirmed. The median time between the onset of symptoms and the release of laboratory results was 12 days for the analyzed period. Conclusion: Epidemiological surveillance uses several data sources to monitor and analyze the transmission of COVID-19. The timeliness of this system to detect cases of the disease is compromised by the delay in the release of laboratory results, which has been a considerable challenge for adequate surveillance.

Objetivos: Descrever as ações realizadas pela vigilância epidemiológica da Secretaria Municipal de Saúde de Belo Horizonte para enfrentamento da epidemia de COVID-19 e avaliar a oportunidade para detecção precoce da transmissão da doença durante o período compreendido entre 1 de janeiro a 24 de abril de 2020. Métodos: Foram identificadas as fontes de informação utilizadas pela vigilância epidemiológica do município para a COVID-19 e analisadas a distribuição temporal e oportunidade para detecção dos casos confirmados da doença. Resultados: A vigilância epidemiológica do município utiliza fontes de notificações ambulatoriais, hospitalares, de laboratórios públicos e privados, além de busca ativa com cruzamento de dados laboratoriais na investigação de óbitos suspeitos, sendo os casos confirmados de COVID-19 informados em sistemas de informação oficiais. Foram notificados 1.449 casos internados, sendo o primeiro caso detectado no final de fevereiro de 2020. Do total de 1.025 amostras laboratoriais de casos internados após a semana epidemiológica 8, foram confirmados 87 casos (8,5%) por COVID-19. A mediana de tempo entre o início dos sintomas e liberação dos resultados laboratoriais foi de 12 dias. Conclusão: A vigilância epidemiológica utiliza várias fontes de dados para monitoramento e análise da transmissão da COVID-19. A oportunidade para detecção de casos da doença está comprometida pela demora na liberação dos resultados laboratoriais, sendo um desafio para a vigilância.