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Abstract The Brazilian Practice Guidelines for Stroke Rehabilitation – Part II, developed by the Scientific Department of Neurological Rehabilitation of the Brazilian Academy of Neurology (Academia Brasileira de Neurologia, in Portuguese), focuses on specific rehabilitation techniques to aid recovery from impairment and disability after stroke. As in Part I, Part II is also based on recently available evidence from randomized controlled trials, systematic reviews, meta-analyses, and other guidelines. Part II covers disorders of communication, dysphagia, postural control and balance, ataxias, spasticity, upper limb rehabilitation, gait, cognition, unilateral spatial neglect, sensory impairments, home rehabilitation, medication adherence, palliative care, cerebrovascular events related to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, the future of stroke rehabilitation, and stroke websites to support patients and caregivers. Our goal is to provide health professionals with more recent knowledge and recommendations for better rehabilitation care after stroke.

Resumo As Diretrizes Brasileiras de Reabilitação do Acidente Vascular Cerebral (AVC) - Parte II, desenvolvida pelo Departamento Científico de Reabilitação Neurológica da Academia Brasileira de Neurologia é voltada para intervenções específicas de técnicas de reabilitação de déficits neurológicos e incapacidades. Seguindo o mesmo modelo da Parte I, a Parte II também se baseia em estudos randomizados, revisões sistemáticas, metanálises e outras diretrizes sobre o mesmo tema. A segunda parte aborda os distúrbios da comunicação, disfagia, controle postural e equilíbrio, ataxias, espasticidade, reabilitação do membro superior, marcha, cognição, negligência espacial unilateral, déficits sensoriais, reabilitação domiciliar, aderênciaao usode medicamentos, cuidados paliativos,ofuturodareabilitação no AVC, e websites de orientação sobre AVC para pacientes e cuidadores. Nosso objetivo é fornecer aos profissionais envolvidos na reabilitação conhecimento atualizado e recomendações para um melhor cuidado no pós-AVC.

https://doi.org/10.1055/s-0042-1757692

Brazilian Academy of Neurology practice guidelines for stroke rehabilitation: part I
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Minelli, Cesar

; Bazan, Rodrigo

; Pedatella, Marco Túlio Araújo

; Neves, Luciana de Oliveira

; Cacho, Roberta de Oliveira

; Magalhães, Sheila Cristina Sayuri Abe

; Luvizutto, Gustavo José

; Moro, Carla Heloísa Cabral

; Lange, Marcos Christiano

; Modolo, Gabriel Pinheiro

; Lopes, Bruna Correia

; Pinheiro, Elisandra Leites

; Souza, Juli Thomaz de

; Rodrigues, Guilherme Riccioppo

; Fabio, Soraia Ramos Cabette

; Prado, Gilmar Fernandes do

; Carlos, Karla

; Teixeira, Juliana Junqueira Marques

; Barreira, Clara Monteiro Antunes

; Castro, Rodrigo de Souza

; Quinan, Thalita Dayrell Leite

; Damasceno, Eduardo

; Almeida, Kelson James

; Pontes-Neto, Octávio Marques

; Dalio, Marina Teixeira Ramalho Pereira

; Camilo, Millene Rodrigues

; Tosin, Michelle Hyczy de Siqueira

; Oliveira, Bianca Campos

; Oliveira, Beatriz Guitton Renaud Baptista de

; Carvalho, João José Freitas de

; Martins, Sheila Cristina Ouriques

Arquivos de Neuro-Psiquiatria

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Jun 2022, Volume 80 Nº 6 Páginas 634 - 652

Resumo: Pt En | Texto: Pt En | PDF: Pt | PDF: En

RESUMO As Diretrizes Brasileiras para Reabilitação do AVC são fruto de um esforço conjunto do Departamento Científico de Reabilitação Neurológica da Academia Brasileira de Neurologia com o objetivo de orientar os profissionais envolvidos no processo de reabilitação para a redução da incapacidade funcional e aumento da autonomia dos indivíduos. Membros do grupo acima participaram de fóruns de discussão na web com pré-temas, seguidos de reuniões por videoconferência em que as controvérsias foram discutidas, levando a um consenso. Essas diretrizes, divididas em duas partes, focam as implicações de recentes ensaios clínicos, revisões sistemáticas e metanálises sobre reabilitação do AVC. O objetivo principal é servir de orientação a médicos, fisioterapeutas, fonoaudiólogos, terapeutas ocupacionais, enfermeiros, nutricionistas e demais profissionais envolvidos no cuidado pós-AVC. As recomendações e níveis de evidência foram adaptados de acordo com a literatura disponível atualmente. Aqui é apresentada a Parte I sobre tópicos de reabilitação na fase aguda, prevenção e tratamento de doenças e comorbidades frequentes após o AVC.

ABSTRACT The Guidelines for Stroke Rehabilitation are the result of a joint effort by the Scientific Department of Neurological Rehabilitation of the Brazilian Academy of Neurology aiming to guide professionals involved in the rehabilitation process to reduce functional disability and increase individual autonomy. Members of the group participated in web discussion forums with predefined themes, followed by videoconference meetings in which issues were discussed, leading to a consensus. These guidelines, divided into two parts, focus on the implications of recent clinical trials, systematic reviews, and meta-analyses in stroke rehabilitation literature. The main objective was to guide physicians, physiotherapists, speech therapists, occupational therapists, nurses, nutritionists, and other professionals involved in post-stroke care. Recommendations and levels of evidence were adapted according to the currently available literature. Part I discusses topics on rehabilitation in the acute phase, as well as prevention and management of frequent conditions and comorbidities after stroke.

https://doi.org/10.1590/0004-282x-anp-2021-0354

Guidelines on COVID-19 vaccination in patients with immune-mediated rheumatic diseases: a Brazilian Society of Rheumatology task force
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Tavares, Anna Carolina Faria Moreira Gomes

; Melo, Ana Karla Guedes de

; Cruz, Vítor Alves

; Souza, Viviane Angelina de

; Carvalho, Joana Starling de

; Machado, Ketty Lysie Libardi Lira

; Valadares, Lilian David de Azevedo

; Reis Neto, Edgard Torres dos

; Rezende, Rodrigo Poubel Vieira de

; Guimarães, Maria Fernanda Brandão de Resende

; Ferreira, Gilda Aparecida

; Braz, Alessandra de Sousa

; Vieira, Rejane Maria Rodrigues de Abreu

; Pinheiro, Marcelo de Medeiros

; Ribeiro, Sandra Lúcia Euzébio

; Bica, Blanca Elena Gomes Rios

; Baptista, Kátia Lino

; Costa, Izaias Pereira da

; Marques, Claudia Diniz Lopes

; Lopes, Maria Lúcia Lemos

; Martinez, José Eduardo

; Giorgi, Rina Dalva Neubarth

; Mota, Lícia Maria Henrique da

; Loures, Marcos Antônio Araújo da Rocha

; Paiva, Eduardo dos Santos

; Monticielo, Odirlei André

; Xavier, Ricardo Machado

; Kakehasi, Adriana Maria

; Pileggi, Gecilmara Cristina Salviato

Advances in Rheumatology

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2022, Volume 62 elocation 3

Resumo: En | Texto: En | PDF: En

Abstract Objective: To provide guidelines on the coronavirus disease 2019 (COVID-19) vaccination in patients with immune-mediated rheumatic diseases (IMRD) to rheumatologists considering specific scenarios of the daily practice based on the shared-making decision (SMD) process. Methods: A task force was constituted by 24 rheumatologists (panel members), with clinical and research expertise in immunizations and infectious diseases in immunocompromised patients, endorsed by the Brazilian Society of Rheumatology (BSR), to develop guidelines for COVID-19 vaccination in patients with IMRD. A consensus was built through the Delphi method and involved four rounds of anonymous voting, where five options were used to determine the level of agreement (LOA), based on the Likert Scale: (1) strongly disagree; (2) disagree, (3) neither agree nor disagree (neutral); (4) agree; and (5) strongly agree. Nineteen questions were addressed and discussed via teleconference to formulate the answers. In order to identify the relevant data on COVID-19 vaccines, a search with standardized descriptors and synonyms was performed on September 10th, 2021, of the MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials, ClinicalTrials.gov, and LILACS to identify studies of interest. We used the Newcastle–Ottawa Scale to assess the quality of nonrandomized studies. Results: All the nineteen questions-answers (Q&A) were approved by the BSR Task Force with more than 80% of panelists voting options 4—agree—and 5—strongly agree—, and a consensus was reached. These Guidelines were focused in SMD on the most appropriate timing for IMRD patients to get vaccinated to reach the adequate covid-19 vaccination response. Conclusion: These guidelines were developed by a BSR Task Force with a high LOA among panelists, based on the literature review of published studies and expert opinion for COVID-19 vaccination in IMRD patients. Noteworthy, in the pandemic period, up to the time of the review and the consensus process for this document, high-quality evidence was scarce. Thus, it is not a substitute for clinical judgment.

https://doi.org/10.1186/s42358-022-00234-7

A Review of Adaptable Serious Games Applied to Professional Training
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Pistono, Álvaro Marcos

; Santos, Arnaldo Manuel Pinto

; Baptista, Ricardo José Vieira

Journal of Digital Media and Interaction

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Dez 2021, Volume 4 Nº 11 Páginas 60 - 85

Resumo: En | Texto: En | PDF: En

Abstract Serious Games have been used in professional training to increase employee engagement and improve training initiatives. This review intends to identify the application of Serious Games in professional training and how these games have been developed, evaluated, and adapted to relate to the learning outcomes. It aims to map the use of Serious Games in professional training, verifying which forms of adaptation are used, learning outcomes, and models and frameworks of Serious Games that include game elements. Different learning outcomes associated with Serious Games were identified, in the general context and professional training, with knowledge acquisition being the most investigated result and questionnaires the most used type of assessment. It was found that several technologies are used in the adaptation of Serious Games. This literature review highlighted gaps in Serious Games research, especially in adaptive games applied in the context of professional training, such as the absence of frameworks for adaptive Serious Games and the lack of a framework for Serious Games that relates game elements to learning outcomes.

https://doi.org/10.34624/jdmi.v4i11.26419

COVID-19 findings in chest computed tomography
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Calvi, Camila

; Ferreira, Fernanda Filetti

; Lyrio, Lucas

; Baptista, Rodrigo de Melo

; Zanoni, Barbara Binda

; Junger, Ynara Olivier

; Barros, Wagner Haese

; Volpato, Ricardo

; Mule Júnior, Libório

; Rosa Júnior, Marcos

Revista da Associação Médica Brasileira

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Out 2021, Volume 67 Nº 10 Páginas 1409 - 1414

Resumo: En | Texto: En | PDF: En

SUMMARY OBJECTIVE: The aim of this study was to describe chest computed tomography image findings in patients with COVID-19. METHODS: The chest computed tomography scans of 453 hospitalized patients with confirmed COVID-19 were collected at two tertiary care Brazilian hospitals. Demographics and clinical data were extracted from the electronic record medical system. RESULTS: The main chest computed tomography findings were ground-glass opacities (92.5%), consolidation (79.2%), crazy-paving pattern (23.9%), parenchymal bands (50%), septal thickening (43.5%), and inverted halo sign (3.5%). Of the 453 hospitalized patients, 136 (30%) died. In this group, ground-glass opacities (94.1%), consolidation (89.7%), septal thickening (58.1%), crazy-paving pattern (52.2%), and parenchymal bands (39.7%) were the most common imaging findings. CONCLUSIONS: In a dynamic disease with a broad clinical spectrum such as COVID-19, radiologists can cooperate in a better patient management. On wisely indicated chest computed tomography scans, the fast identification of poor prognosis findings could advise patient management through hospital care facilities and clinical team decisions.

https://doi.org/10.1590/1806-9282.20210414

DISINFECTION PROTOCOL AND IN VITRO GERMINATION OF SEEDS OF Dalbergia nigra
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Santos, Maricélia Moreira dos

; Cezario, Luis Filipe Cabral

; Simões, Ingridh Medeiros

; Baptista, Julcinara Oliveira

; Araujo, Caroline Palacio de

; Mello, Tamyris de

; Mayard, Hernesise

; Gonçalves, Elzimar de Oliveira

; Fontes, Milene Miranda Praça

; Schmildt, Edilson Romais

; Lopes, José Carlos

; Caldeira, Marcos Vinicius Winckler

; Alexandre, Rodrigo Sobreira

CERNE

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Jun 2020, Volume 26 Nº 2 Páginas 238 - 246

Resumo: En | Texto: En | PDF: En

ABSTRACT The Atlantic Forest is a biome that has suffered anthropic actions, such as the extraction of hardwood, which can lead to the extinction of endemic species of great economic and ecological value, such as Dalbergia nigra. In this perspective, large-scale multiplication studies are necessary to contribute to the conservation of this species. The objective of this work was to establish a protocol for the in vitro production of axenic seedlings of D. nigra. Four experiments were performed: I. Immersion times in NaOCl. II. Disinfecting agents in seed germination of D. nigra. III. NaOCl toxicity in seeds of the model species Lactuca sativa L. IV. Culture media and glutamine in the germination and initial growth of D. nigra. All experiments were arranged in a completely randomized design. For a better disinfestation and less harmful effects to the seedlings, it is recommended that the seeds be treated with 70% alcohol (1 min) and NaOCl (14 min). NaOCl has a high phytotoxic, cytotoxic, and genotoxic effect, and its mechanism of action in the L. sativa cell cycle is clastogenic and aneugenic, suggesting the formation of abnormal seedlings in D. nigra. The WPM medium and its supplementation with glutamine (0.75 mg.L-1) are recommended.

https://doi.org/10.1590/01047760202026022714 443 downloads

VITRO OF Melanoxylon brauna SCHOTT. MORPHOGENESIS: RESPONSIVENESS OF EXPLANTS TO PERMANENT AND TEMPORARY IMMERSION GROWTH REGULATORS
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Silva, Elisa Regina da

; Simões, Ingridh Medeiros

; Baptista, Julcinara Oliveira

; Schmildt, Edilson Romais

; Lopes, José Carlos

; Gonçalves, Elzimar de Oliveira

; Caldeira, Marcos Vinícius Winckler

; Alexandre, Rodrigo Sobreira

CERNE

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Mar 2020, Volume 26 Nº 1 Páginas 26 - 36

Resumo: En | Texto: En | PDF: En

ABSTRACT Melanoxylon brauna is propagated by seeds, however, low yield, pest attack and short viability are problems in seedling production. In vitro cultivation is an alternative for large-scale seedling production, but studies with this species are scarce. The aim of the work was to analyze the in vitro morphogenesis of braúna. Explants after induction of growth regulators. Three experiments were performed: I. In vitro bud proliferation of juvenile explants at different BAP concentrations. Was analyzed the number and length of shoots (mm); bud explants-1 (%); calogenesis (%) and direct and indirect organogenesis budding-1 (%). II. In vitro rhizogenesis of shoots with different types and auxin concentrations. III. In vitro rhizogenesis of under temporary immersion of shoots at different IBA concentrations. It was analyzed in experiment I and II: calogenesis (%); rhizogenesis (%); number, length (mm) and root dry mass (mg) the shoots. The nodal segment with two axillary buds was the most responsive explant regardless of the use of BAP. The stem apex with the use of BAP (2.5-3.5 mg.L-1) was the most responsive in the proliferation of shoots. Tested concentrations of auxins IBA, NAA and 2,4-D were not sufficient for in vitro rhizogenesis. The average of the maximum technical efficiencies of the variables used to analyze rhizogenic process suggests the treatment of the shoots base by temporary immersion in the IBA at an approximate concentration of 2,500 mg.L-1 and planting on the vermiculite substrate.

https://doi.org/10.1590/01047760202026012709 573 downloads

COVID-19: molecular targets, drug repurposing and new avenues for drug discovery
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Senger, Mario Roberto

; Evangelista, Tereza Cristina Santos

; Dantas, Rafael Ferreira

; Santana, Marcos Vinicius da Silva

; Gonçalves, Luiz Carlos Saramago

; de Souza Neto, Lauro Ribeiro

; Ferreira, Sabrina Baptista

; Silva-Junior, Floriano Paes

Memórias do Instituto Oswaldo Cruz

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2020, Volume 115 elocation e200254

Resumo: En | Texto: En | PDF: En

Coronavirus disease 2019 (COVID-19) caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is a highly contagious infection that may break the healthcare system of several countries. Here, we aimed at presenting a critical view of ongoing drug repurposing efforts for COVID-19 as well as discussing opportunities for development of new treatments based on current knowledge of the mechanism of infection and potential targets within. Finally, we also discuss patent protection issues, cost effectiveness and scalability of synthetic routes for some of the most studied repurposing candidates since these are key aspects to meet global demand for COVID-19 treatment.

https://doi.org/10.1590/0074-02760200254 7394 downloads

Yet another record of Scylla serrata Forsskål, 1775 (Crustacea: Decapoda: Portunidae) from the western Atlantic
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Metri, Cassiana Baptista

; Guilherme, Pablo Damian Borges

; Tavares, Marcos

Papéis Avulsos de Zoologia

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2020, Volume 60 elocation e20206062

Resumo: En | Texto: En | PDF: En

Abstract The Indo-Pacific edible swimming crab Scylla serrata is reported here for the fifth time from the western Atlantic including a failed attempt of introduction to Florida for aquaculture purposes in the years 1960’s. The species had been recorded from Brazil in the early 1980’s and in 2011 and from the Caribbean coast of Colombia in 2013. The capture of a third specimen in southeastern Brazil on 24 August 2020 is discussed here. On all occasions individuals found in Brazil were adults captured alive near port areas. The occurrence of S. serrata in disparate time periods in the western Atlantic (1983, 2011, 2013 and 2020) is regarded as an indication of low inoculation pressure.

https://doi.org/10.11606/1807-0205/2020.60.62 113 downloads

10.

IN VITRO GERMINATION OF MELANOXYLON BRAUNA SCHOTT. AND EVALUATION OF THE TOXICITY OF DISINFECTING AGENTS IN THE LACTUCA SATIVA L. MODEL PLANT
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Silva, Elisa Regina da

; Simões, Ingridh Medeiros

; Baptista, Julcinara Oliveira

; Bighi, Kelly Nery

; Fontes, Milene Miranda Praça

; Schmildt, Edilson Romais

; Lopes, José Carlos

; Caldeira, Marcos Vinícius Winckler

; Alexandre, Rodrigo Sobreira

CERNE

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Dez 2019, Volume 25 Nº 4 Páginas 375 - 385

Resumo: En | Texto: En | PDF: En

ABSTRACT The development of tissue cultured-based protocols applied to braúna, an endangeres species, would be though highly desirable. However, contamination-free explants are determinant for the success of this technique, which might be vulnerable to the toxicity of disinfectants. Here, we aimed at establishing an efficient protocol for in vitro production of axenic seedlings of braúna and to evaluate the toxicity of disinfectant agents in the Lactuca sativa model species. Experiments I and II: Seeds were treated with sodium hypochlorite (NaOCl) and fungicide captan, with and without residue, by different immersion times, respectively. The following were analyzed: contamination; germination and normal and abnormal seedlings. Experiment III: Lettuce seeds placed in Petri dishes were exposed to 2.5 mL captan at 0.5; 1; 2; 4 and 8%; 0.01% glyphosate and distilled water. The germination, length of seedlings, cell cycle, nuclear and chromosomal alterations of the cells of the root meristem were assesed. The isolated use of NaOCl was not efficient in the disinfestation of braúna seeds. However, the immersion of the seeds in captan, for 10 minutes with its residue, led to higher germination and vigor indexes; however, resulted in the formation of abnormal seedlings. This compound exhibited toxicity in the lettuce model seeds because affected the germination and the whole development of the seedlings, showing clastogenic and aneugenic action in the meristematic cell cycle.

https://doi.org/10.1590/01047760201925042688 562 downloads

11.

Adoecimentos raros e o diálogo associativo: ressignificações para experiências morais
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Moreira, Martha Cristina Nunes

; Nascimento, Marcos Antonio Ferreira do

; Campos, Daniel de Souza

; Albernaz, Lidianne

; Costa, Ana Carolina Carioca da

; Barros, Letícia Baptista de Paula

; Horovitz, Dafne Dain Gandelman

; Martins, Antilia Januária

; Madureira, Adelino Furtado

; Oliveira, Nicole Velloso de

; Pinto, Márcia

Ciência & Saúde Coletiva

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Out 2019, Volume 24 Nº 10 Páginas 3673 - 3682

Resumo: Pt En | Texto: Pt En | PDF: Pt | PDF: En

Resumo Neste artigo, buscamos discutir a experiência de familiares de crianças e adolescentes com doenças raras como uma experiência moral. A experiência moral se caracteriza pelo sofrimento que é lido, coletivamente, como acontecimento catastrófico, mobilizando recursos para significação e sentido que possibilitem reconstruções identitárias, valoração de novas trajetórias a partir de um diagnóstico raro, assim como a busca de pares. Nesse sentido, é fundamental a construção de relações de reconhecimento, alteridade e pertencimento. A partir de uma perspectiva interacionista simbólica, os resultados mostram dois núcleos: (1) o susto como surpresa diante do diagnóstico inesperado, levando a busca de pares e promoção do reconhecimento social; (2) o custo envolvido com a trajetória de uma doença rara que implica um trabalho de care e a aquisição de capital associativo como possibilidade de fortalecimento e construção de capital social de cuidado à saúde.

Abstract This paper aims to discuss the experience of relatives of children and adolescents with rare diseases as a moral experience. Moral experience is characterized by suffering that is socially interpreted as a catastrophic event, mobilizing resources for signification and meaning that allow the reconstruction of identity, the appreciation of itineraries from a rare diagnosis, as well as the search for peers. Thus, the construction of relationships of recognition, alterity, and belonging is fundamental. From a symbolic interactionist perspective, the results show two significant cores: (1) shock as a surprise in the face of an unexpected diagnosis, leading to the search for peers and promotion of social recognition; (2) the cost involved with the course of a rare disease that implies a care work and the acquisition of associative capital as a possibility of strengthening and building the social capital of health care.

https://doi.org/10.1590/1413-812320182410.11822019

12.

Adoecimentos raros e o diálogo associativo: ressignificações para experiências morais
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Moreira, Martha Cristina Nunes

; Nascimento, Marcos Antonio Ferreira do

; Campos, Daniel de Souza

; Albernaz, Lidianne

; Costa, Ana Carolina Carioca da

; Barros, Letícia Baptista de Paula

; Horovitz, Dafne Dain Gandelman

; Martins, Antilia Januária

; Madureira, Adelino Furtado

; Oliveira, Nicole Velloso de

; Pinto, Márcia

Ciência & Saúde Coletiva

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Out 2019, Volume 24 Nº 10 Páginas 3673 - 3682

Resumo: Pt En | Texto: Pt En | PDF: Pt | PDF: En

https://doi.org/10.1590/1413-812320182410.11822019 1519 downloads

13.

Cuidado complexo, custo elevado e perda de renda: o que não é raro para as famílias de crianças e adolescentes com condições de saúde raras
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Pinto, Márcia

; Madureira, Adelino

; Barros, Letícia Baptista de Paula

; Nascimento, Marcos

; Costa, Ana Carolina Carioca da

; Oliveira, Nicole Velloso de

; Albernaz, Lidianne

; Campos, Daniel de Souza

; Horovitz, Dafne Dain Gandelman

; Martins, Antilia Januária

; Moreira, Martha Cristina Nunes

Cadernos de Saúde Pública

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2019, Volume 35 Nº 9 elocation e00180218

Resumo: Pt En Es | Texto: Pt En Es | PDF: Pt | PDF: En | PDF: Es

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

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

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

https://doi.org/10.1590/0102-311x00180218

14.

Cuidado complexo, custo elevado e perda de renda: o que não é raro para as famílias de crianças e adolescentes com condições de saúde raras
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Pinto, Márcia

; Madureira, Adelino

; Barros, Letícia Baptista de Paula

; Nascimento, Marcos

; Costa, Ana Carolina Carioca da

; Oliveira, Nicole Velloso de

; Albernaz, Lidianne

; Campos, Daniel de Souza

; Horovitz, Dafne Dain Gandelman

; Martins, Antilia Januária

; Moreira, Martha Cristina Nunes

Cadernos de Saúde Pública

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2019, Volume 35 Nº 9 elocation e00180218

Resumo: Pt En Es | Texto: Pt En Es | PDF: Pt | PDF: En | PDF: Es

https://doi.org/10.1590/0102-311x00180218 1650 downloads

15.

Vase life of floral and vegetative stems of Costaceae
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Silva Júnior, Marcos Antonio da

; Luz, Petterson Baptista da

; Barros, Carolina de Faria Cabral Paes Pereira e

; Medeiros, Carolina Moreira de

Ornamental Horticulture

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Out 2018, Volume 24 Nº 4 Páginas 443 - 450

Resumo: Pt En | Texto: Pt En | PDF: Pt | PDF: En

RESUMO Objetivou-se avaliar a longevidade pós-colheita de hastes florais e vegetativas de Costaceae e determinar as características morfológicas das mesmas. Para avaliação da longevidade pós-colheita de hastes florais foram utilizadas quatro espécies e a longevidade de hastes vegetativas foram utilizadas seis espécies. Para colheita das hastes florais, foi estabelecido três estádios de corte, estádio 1: hastes florais dias antes da abertura das flores, estádio 2: hastes florais no início da abertura da (s) primeira (s) flor (es) (antese) e estádio 3: hastes florais com mais de 15 flores abertas, entretanto só se aplicou 2 estádios diferentes para cada espécie. As hastes florais foram padronizadas quanto ao comprimento para 50 cm, e as hastes vegetativas para 70 cm. Das hastes florais foram determinadas as características morfológicas: diâmetro da haste floral, comprimento da inflorescência, diâmetro da inflorescência e massa fresca da haste floral, e das hastes vegetativas: o diâmetro e massa fresca. Após as primeiras avaliações, as hastes foram mantidas a temperatura média de 22 °C e umidade de 53%. Foi avaliado o número total de dias (longevidade global) pós-colheita em que as hastes florais e vegetativas apresentavam aspectos aceitáveis para uso em vasos. A maior longevidade pós-colheita para hastes florais foi observada nas espécies Costus woodsoni, Costus arabicus x Costus spiralis (Costus Tropicais), e Costus scaber (laranja), quando suas hastes florais foram colhidas no estádio 1. Para Hellenia speciosa o estádio 3 de colheita apresentou maior longevidade. H. speciosa independente do estádio colhido apresentou os maiores valores e C. woodsonii os menores valores das características morfológicas. A longevidade pós-colheita das hastes vegetativas das seis espécies foi satisfatória, onde Costus scaber (laranja) apresentou menor longevidade e Costus arabicus (amarelo) a maior longevidade. Dimerocostus strobilaceus apresentou os maiores valores e Costus arabicus (rosa) os menores valores das características morfológicas. Tanto as hastes florais quanto as vegetativas de Costus podem ser empregadas para corte.

ABSTRACT This study aimed to evaluate the vase life of floral and vegetative stems of Costaceae and describe their morphological characteristics. To evaluate the vase life of floral and vegetative stems, four and six species were used, respectively. Three cutting stages were established for floral stems. Stems were cut a few days before flower opening at stage 1, upon opening of the first flower(s) (anthesis) at stage 2, and when floral stems showed more than 15 opened flowers at stage 3. However, only two different stages were applied for each species. Floral stems were standardized with 50 cm in length, while vegetative stems were standardized with 70 cm in length. The morphological characteristics determined for floral stems included diameter of the floral stem, length of inflorescence, diameter of inflorescence and fresh mass of floral stem. For vegetative stems, we considered diameter and fresh mass. After the first evaluation, stems were maintained at 22 °C and 53% of humidity. The total number of post-harvest days (global longevity) in which the quality of floral and vegetative stems was acceptable were evaluated. The highest vase life for floral stems at stage 1 was observed for Costus woodsoni, Costus arabicus x Costus spiralis (Costus Tropicales), and Costus scaber. Hellenia speciosa showed higher vase life at stage 3. H. speciosa showed the highest vase life and C. woodsonii the lowest values for morphological characteristics. The vase life of vegetative stems for the six species was satisfactory. Costus scaber (orange) showed the shortest longevity and Costus arabicus (yellow) longest longevity. Dimerocostus strobilaceus showed the highest values of morphological characteristics, and Costus arabicus (pink) showed lowest values. Based on the results, both floral and vegetative stems of Costaceae can be used for cutting.

https://doi.org/10.14295/oh.v24i4.1220 540 downloads

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