A participação de Conselheiros Municipais de Saúde: solução que se transformou em problema?

A proposta de controle social instituída pela constituição abriu perspectivas para uma prática democrática ímpar no setor saúde. O Sistema Único de Saúde utiliza o Conselho Municipal de Saúde (CMS) como meio de cumprimento do princípio constitucional da "participação da comunidade" para assegurar o controle social sobre as ações e serviços de saúde do município. O CMS tem competência para examinar e aprovar as diretrizes da política de saúde, para que sejam alcançados seus objetivos. Ao atuar na formulação de estratégias, o Conselho pode aperfeiçoá-las, propor meios aptos para sua execução ou mesmo indicar correções de rumos. Em Botucatu (SP), o CMS existe desde 1992 e nossa proposta foi analisar a participação dos conselheiros e sua representatividade. Para esse propósito, utilizamos uma abordagem qualitativa que permitisse uma aproximação e o conhecimento daquela realidade. Os resultados mostraram, entre vários aspectos, que, em média, metade dos conselheiros titulares e um terço dos suplentes comparecem às reuniões. Além de interessados, esses conselheiros trazem reivindicações ou sugestões do grupo que representam, considerando boa a repercussão dessas reivindicações, porém nem sempre obtêm respostas satisfatórias, pois algumas decisões são tomadas fora do âmbito do conselho; percebem dificuldade de integração entre os serviços de saúde; a própria organização das reuniões dificulta a participação e, muitas vezes, a reunião apenas aprova pacotes ministeriais que devem ser implementados. Ouvir os conselheiros permitiu levantar problemas que precisam ser enfrentados e, com isso, fazer avançar o processo democrático, ou seja, um desafio para a vida.The Brazilian Constitution proposal of social control opened many perspectives towards a democratic practice in health area. The Brazilian Health System has the Municipal Health Council to execute the constitution principle of "community participation", which means to assure social control on actions and services in any municipality. This Council has the competence to exam and to approve the directions established by health policies to reach their objectives. It also formulates strategies and through them, it is possible to improve and suggest proper means to execute them or to correct directions. In Botucatu (Sao Paulo state) the Municipal Health Council was formed in 1992 and this study aimed to analyze the participation of its members. A qualitative approach was adopted. Results showed that half of the principal members, a third part of the substitutes and also visitors attended the meetings, they brought claims or suggestions from the social groups they represent and had good evaluation about the effect over all the members, but not always they got adequate answers. Some of the problems were: decision-making outside the Council, the difficult integration among different health services, the poor organization of the meetings like long duration, lack of objectiveness in the questions, etc. and meetings only to approve decisions already taken by federal or state government. To listen to the councilors allowed to understand the problems faced and to perceive their proposals for advancement of the democratic process which is a challenge for life

Clinical expression of facioscapulohumeral muscular dystrophy in carriers of 1-3 D4Z4 reduced alleles: Experience of the FSHD Italian National Registry

OBJECTIVES: Facioscapulohumeral muscular dystrophy type 1 (FSHD1) has been genetically linked to reduced numbers ( 64 8) of D4Z4 repeats at 4q35. Particularly severe FSHD cases, characterised by an infantile onset and presence of additional extra-muscular features, have been associated with the shortest D4Z4 reduced alleles with 1-3 repeats (1-3 DRA). We searched for signs of perinatal onset and evaluated disease outcome through the systematic collection of clinical and anamnestic records of de novo and familial index cases and their relatives, carrying 1-3 DRA. SETTING: Italy. PARTICIPANTS: 66 index cases and 33 relatives carrying 1-3 DRA. OUTCOMES: The clinical examination was performed using the standardised FSHD evaluation form with validated inter-rater reliability. To investigate the earliest signs of disease, we designed the Infantile Anamnestic Questionnaire (IAQ). Comparison of age at onset was performed using the non-parametric Wilcoxon rank-sum or Kruskal-Wallis test. Comparison of the FSHD score was performed using a general linear model and Wald test. Kaplan-Meier survival analysis was used to estimate the age-specific cumulative motor impairment risk. RESULTS: No patients had perinatal onset. Among index cases, 36 (54.5%) showed the first signs by 10 years of age. The large majority of patients with early disease onset (26 out of 36, 72.2%) were de novo; whereas the majority of patients with disease onset after 10 years of age were familial (16, 53.3%). Comparison of the disease severity outcome between index cases with age at onset before and over 10 years of age, failed to detect statistical significance (Wald test p value=0.064). Of 61 index cases, only 17 (27.9%) presented extra-muscular conditions. Relatives carrying 1-3 DRA showed a large clinical variability ranging from healthy subjects, to patients with severe motor impairment. CONCLUSIONS: The size of the D4Z4 allele is not always predictive of severe clinical outcome. The high degree of clinical variability suggests that additional factors contribute to the phenotype complexity

Distribution of Exonic Variants in Glycogen Synthesis and Catabolism Genes in Late Onset Pompe Disease (LOPD)

Pompe disease (PD) is a monogenic autosomal recessive disorder caused by biallelic pathogenic variants of the GAA gene encoding lysosomal alpha-glucosidase; its loss causes glycogen storage in lysosomes, mainly in the muscular tissue. The genotype-phenotype correlation has been extensively discussed, and caution is recommended when interpreting the clinical significance of any mutation in a single patient. As there is no evidence that environmental factors can modulate the phenotype, the observed clinical variability in PD suggests that genetic variants other than pathogenic GAA mutations influence the mechanisms of muscle damage/repair and the overall clinical picture. Genes encoding proteins involved in glycogen synthesis and catabolism may represent excellent candidates as phenotypic modifiers of PD. The genes analyzed for glycogen synthesis included UGP2, glycogenin (GYG1-muscle, GYG2, and other tissues), glycogen synthase (GYS1-muscle and GYS2-liver), GBE1, EPM2A, NHLRC1, GSK3A, and GSK3B. The only enzyme involved in glycogen catabolism in lysosomes is alpha-glucosidase, which is encoded by GAA, while two cytoplasmic enzymes, phosphorylase (PYGB-brain, PGL-liver, and PYGM-muscle) and glycogen debranching (AGL) are needed to obtain glucose 1-phosphate or free glucose. Here, we report the potentially relevant variants in genes related to glycogen synthesis and catabolism, identified by whole exome sequencing in a group of 30 patients with late-onset Pompe disease (LOPD). In our exploratory analysis, we observed a reduced number of variants in the genes expressed in muscles versus the genes expressed in other tissues, but we did not find a single variant that strongly affected the phenotype. From our work, it also appears that the current clinical scores used in LOPD do not describe muscle impairment with enough qualitative/quantitative details to correlate it with genes that, even with a slightly reduced function due to genetic variants, impact the phenotype

Antimicrobial resistance among migrants in Europe: a systematic review and meta-analysis

BACKGROUND: Rates of antimicrobial resistance (AMR) are rising globally and there is concern that increased migration is contributing to the burden of antibiotic resistance in Europe. However, the effect of migration on the burden of AMR in Europe has not yet been comprehensively examined. Therefore, we did a systematic review and meta-analysis to identify and synthesise data for AMR carriage or infection in migrants to Europe to examine differences in patterns of AMR across migrant groups and in different settings. METHODS: For this systematic review and meta-analysis, we searched MEDLINE, Embase, PubMed, and Scopus with no language restrictions from Jan 1, 2000, to Jan 18, 2017, for primary data from observational studies reporting antibacterial resistance in common bacterial pathogens among migrants to 21 European Union-15 and European Economic Area countries. To be eligible for inclusion, studies had to report data on carriage or infection with laboratory-confirmed antibiotic-resistant organisms in migrant populations. We extracted data from eligible studies and assessed quality using piloted, standardised forms. We did not examine drug resistance in tuberculosis and excluded articles solely reporting on this parameter. We also excluded articles in which migrant status was determined by ethnicity, country of birth of participants' parents, or was not defined, and articles in which data were not disaggregated by migrant status. Outcomes were carriage of or infection with antibiotic-resistant organisms. We used random-effects models to calculate the pooled prevalence of each outcome. The study protocol is registered with PROSPERO, number CRD42016043681. FINDINGS: We identified 2274 articles, of which 23 observational studies reporting on antibiotic resistance in 2319 migrants were included. The pooled prevalence of any AMR carriage or AMR infection in migrants was 25·4% (95% CI 19·1-31·8; I2 =98%), including meticillin-resistant Staphylococcus aureus (7·8%, 4·8-10·7; I2 =92%) and antibiotic-resistant Gram-negative bacteria (27·2%, 17·6-36·8; I2 =94%). The pooled prevalence of any AMR carriage or infection was higher in refugees and asylum seekers (33·0%, 18·3-47·6; I2 =98%) than in other migrant groups (6·6%, 1·8-11·3; I2 =92%). The pooled prevalence of antibiotic-resistant organisms was slightly higher in high-migrant community settings (33·1%, 11·1-55·1; I2 =96%) than in migrants in hospitals (24·3%, 16·1-32·6; I2 =98%). We did not find evidence of high rates of transmission of AMR from migrant to host populations. INTERPRETATION: Migrants are exposed to conditions favouring the emergence of drug resistance during transit and in host countries in Europe. Increased antibiotic resistance among refugees and asylum seekers and in high-migrant community settings (such as refugee camps and detention facilities) highlights the need for improved living conditions, access to health care, and initiatives to facilitate detection of and appropriate high-quality treatment for antibiotic-resistant infections during transit and in host countries. Protocols for the prevention and control of infection and for antibiotic surveillance need to be integrated in all aspects of health care, which should be accessible for all migrant groups, and should target determinants of AMR before, during, and after migration. FUNDING: UK National Institute for Health Research Imperial Biomedical Research Centre, Imperial College Healthcare Charity, the Wellcome Trust, and UK National Institute for Health Research Health Protection Research Unit in Healthcare-associated Infections and Antimictobial Resistance at Imperial College London

Combined fit to the spectrum and composition data measured by the Pierre Auger Observatory including magnetic horizon effects

The measurements by the Pierre Auger Observatory of the energy spectrum and mass composition of cosmic rays can be interpreted assuming the presence of two extragalactic source populations, one dominating the flux at energies above a few EeV and the other below. To fit the data ignoring magnetic field effects, the high-energy population needs to accelerate a mixture of nuclei with very hard spectra, at odds with the approximate E$^{-2}$ shape expected from diffusive shock acceleration. The presence of turbulent extragalactic magnetic fields in the region between the closest sources and the Earth can significantly modify the observed CR spectrum with respect to that emitted by the sources, reducing the flux of low-rigidity particles that reach the Earth. We here take into account this magnetic horizon effect in the combined fit of the spectrum and shower depth distributions, exploring the possibility that a spectrum for the high-energy population sources with a shape closer to E$^{-2}$ be able to explain the observations

Extraction of the Muon Signals Recorded with the Surface Detector of the Pierre Auger Observatory Using Recurrent Neural Networks

We present a method based on the use of Recurrent Neural Networks to extract the muon component from the time traces registered with water-Cherenkov detector (WCD) stations of the Surface Detector of the Pierre Auger Observatory. The design of the WCDs does not allow to separate the contribution of muons to the time traces obtained from the WCDs from those of photons, electrons and positrons for all events. Separating the muon and electromagnetic components is crucial for the determination of the nature of the primary cosmic rays and properties of the hadronic interactions at ultra-high energies. We trained a neural network to extract the muon and the electromagnetic components from the WCD traces using a large set of simulated air showers, with around 450 000 simulated events. For training and evaluating the performance of the neural network, simulated events with energies between 1018.5, eV and 1020 eV and zenith angles below 60 degrees were used. We also study the performance of this method on experimental data of the Pierre Auger Observatory and show that our predicted muon lateral distributions agree with the parameterizations obtained by the AGASA collaboration