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1.
J. bras. nefrol ; 41(1): 131-141, Jan.-Mar. 2019. tab
Artigo em Inglês | LILACS | ID: biblio-1002426

RESUMO

Abstract Care for patients with chronic and rare diseases is complex, especially considering the lack of knowledge about the disease, which makes early and precise diagnosis difficult, as well as the need for specific tests, sometimes of high complexity and cost. Added to these factors are difficulties in obtaining adequate treatment when available, in raising patient and family awareness about the disease and treatment compliance. Nephropathic cystinosis is among these diseases. After more than 20 years as a care center for these patients, the authors propose a follow-up protocol, which has been used with improvement in the quality of care and consists of a multidisciplinary approach, including care provided by a physician, nurse, psychologist, nutritionist and social worker. In this paper, each field objectively exposes how to address points that involve the stages of diagnosis and its communication with the patient and their relatives or guardians, covering the particularities of the disease and the treatment, the impact on the lives of patients and families, the approach to psychological and social issues and guidelines on medications and diets. This protocol could be adapted to the follow-up of patients with other rare diseases, including those with renal involvement. This proposal is expected to reach the largest number of professionals involved in the follow-up of these patients, strengthening the bases for the creation of a national protocol, observing the particularities of each case.


Resumo A assistência a pacientes com doenças crônicas e raras é complexa, principalmente pela falta de disseminação de conhecimento sobre a doença, o que dificulta o diagnóstico preciso e precoce, além da necessidade da realização de exames específicos, por vezes de alta complexidade e custo. Somam-se a esses fatores dificuldades na obtenção de tratamento adequado quando disponível, na conscientização do paciente e da família sobre a doença e na aderência ao tratamento. A cistinose nefropática está entre essas doenças. Após mais de 20 anos como centro de atendimento a esses pacientes, os autores propõem um protocolo de seguimento, o qual vem sendo empregado com melhora na qualidade da assistência e consiste de uma abordagem multidisciplinar, incluindo, principalmente, atendimento prestado por médico, enfermeiro, psicólogo, nutricionista e assistente social. Neste artigo, cada área expõe de maneira objetiva como abordar pontos que envolvem as etapas do diagnóstico e sua comunicação ao paciente e a seus familiares ou responsáveis, abrangendo as particularidades da doença e do tratamento, o impacto na vida do paciente e de sua família, a abordagem das questões psicológicas e sociais e orientações quanto a medicamentos e dietas. Considera-se que este protocolo poderia ser adaptado ao seguimento de pacientes portadores de outras doenças raras, incluindo aquelas com envolvimento renal. Com essa proposta, espera-se alcançar o maior número de profissionais envolvidos no seguimento desses pacientes, fortalecendo as bases para a criação de um protocolo nacional, observando-se as particularidades de cada caso.


Assuntos
Humanos , Masculino , Feminino , Recém-Nascido , Lactente , Pré-Escolar , Criança , Adolescente , Adulto , Adulto Jovem , Cistinose/diagnóstico , Cistinose/terapia , Doenças Raras/diagnóstico , Síndrome de Fanconi/diagnóstico , Síndrome de Fanconi/tratamento farmacológico , Equipe de Assistência ao Paciente , Gravidez , Protocolos Clínicos , Diálise Renal , Transplante de Rim , Resultado do Tratamento , Cistinose/complicações , Cistinose/psicologia , Doenças Raras/complicações , Doenças Raras/psicologia , Doenças Raras/tratamento farmacológico , Diálise , Síndrome de Fanconi/complicações , Síndrome de Fanconi/psicologia , Falência Renal Crônica/etiologia
2.
J Bras Nefrol ; 41(1): 131-141, 2019.
Artigo em Inglês, Português | MEDLINE | ID: mdl-30465592

RESUMO

Care for patients with chronic and rare diseases is complex, especially considering the lack of knowledge about the disease, which makes early and precise diagnosis difficult, as well as the need for specific tests, sometimes of high complexity and cost. Added to these factors are difficulties in obtaining adequate treatment when available, in raising patient and family awareness about the disease and treatment compliance. Nephropathic cystinosis is among these diseases. After more than 20 years as a care center for these patients, the authors propose a follow-up protocol, which has been used with improvement in the quality of care and consists of a multidisciplinary approach, including care provided by a physician, nurse, psychologist, nutritionist and social worker. In this paper, each field objectively exposes how to address points that involve the stages of diagnosis and its communication with the patient and their relatives or guardians, covering the particularities of the disease and the treatment, the impact on the lives of patients and families, the approach to psychological and social issues and guidelines on medications and diets. This protocol could be adapted to the follow-up of patients with other rare diseases, including those with renal involvement. This proposal is expected to reach the largest number of professionals involved in the follow-up of these patients, strengthening the bases for the creation of a national protocol, observing the particularities of each case.


Assuntos
Cistinose/diagnóstico , Cistinose/tratamento farmacológico , Síndrome de Fanconi/diagnóstico , Síndrome de Fanconi/tratamento farmacológico , Doenças Raras/diagnóstico , Doenças Raras/tratamento farmacológico , Adolescente , Adulto , Criança , Pré-Escolar , Protocolos Clínicos , Cistinose/complicações , Cistinose/psicologia , Diálise , Síndrome de Fanconi/complicações , Síndrome de Fanconi/psicologia , Feminino , Humanos , Lactente , Recém-Nascido , Falência Renal Crônica/etiologia , Transplante de Rim , Masculino , Equipe de Assistência ao Paciente , Gravidez , Doenças Raras/complicações , Doenças Raras/psicologia , Diálise Renal , Resultado do Tratamento , Adulto Jovem
3.
Rev Inst Med Trop Sao Paulo ; 60: e37, 2018 07 30.
Artigo em Inglês | MEDLINE | ID: mdl-30066805

RESUMO

Annual vaccination is the most effective way to prevent seasonal influenza illness. Instituto Butantan (IB) performed clinical studies with its 2013, 2014 and 2015 seasonal trivalent influenza vaccines (inactivated split-virion). Prospective cohort studies were carried out to describe the safety and immunogenicity of Instituto Butantan influenza vaccines, in healthy adults and elderly, from 2013 to 2015. Immediately after the informed consent was signed, participants underwent blood collection followed by vaccination. On study days 1, 2 and 3 post-vaccination participants were contacted by the staff to evaluate the occurrence of solicited (local and systemic) and non-solicited adverse reactions. On study day 21 (+7) subjects returned to the clinical site for final safety assessments and blood collection to evaluate post-vaccination immunogenicity. The immunogenicity analyses were performed by means of hemagglutination inhibition (HI) assay. The immunogenicity endpoints were: seroprotection (SPR) and seroconversion (SCR) rates and the geometric mean HI antibody titer ratio (GMTR). The 2013 study was conducted at the Centro de Referência para Imunobiológicos Especiais (CRIE) and at the Centro de Pesquisa Clínica do Instituto da Criança, Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo while the 2014 and 2015 studies were conducted at CRIE. The vaccine composition followed the WHO recommendation for the Southern hemisphere seasonal influenza vaccine. Forty-seven healthy adults and 13 elderly participated in the 2013 study, 60 healthy adults and 60 elderly in the 2014 study, and 62 healthy adults and 57 elderly in the 2015 study. In the 2013, 2014 and 2015 studies, pain was the most frequent local adverse reaction and headache the most frequent systemic adverse reaction. All observed adverse reactions were classified as mild or moderate and none as severe. SPR >70% and SPR >60% were observed in adults and elderly, respectively, for the three vaccine viruses, in the 2013, 2014 and 2015 studies. SCR >40% was observed in adults, for the three vaccine viruses, only in the 2014 study and SCR >30% was observed in the elderly, for the three vaccine viruses, only in the 2013 and 2014 studies. GMTR >2.5 among adults, for the three vaccine viruses was only observed in the 2013 study and GMTR >2.0 was observed among elderly, for the three vaccine viruses, in the 2013, 2014 and 2015 studies. The 2013, 2014 and 2015 seasonal influenza vaccines produced by Instituto Butantan were safe and immunogenic according to the immunogenicity criteria defined by the European Medicines Agency (EMA).


Assuntos
Anticorpos Antivirais/sangue , Vírus da Influenza A Subtipo H1N1/imunologia , Vacinas contra Influenza/imunologia , Influenza Humana/imunologia , Adolescente , Adulto , Testes de Inibição da Hemaglutinação , Humanos , Vacinas contra Influenza/efeitos adversos , Influenza Humana/prevenção & controle , Pessoa de Meia-Idade , Estudos Prospectivos , Estações do Ano , Adulto Jovem
4.
Artigo | Sec. Est. Saúde SP, SESSP-IBPROD, Sec. Est. Saúde SP | ID: but-ib15364

RESUMO

Annual vaccination is the most effective way to prevent seasonal influenza illness. Instituto Butantan (IB) performed clinical studies with its 2013, 2014 and 2015 seasonal trivalent influenza vaccines (inactivated split-virion). Prospective cohort studies were carried out to describe the safety and immunogenicity of Instituto Butantan influenza vaccines, in healthy adults and elderly, from 2013 to 2015. Immediately after the informed consent was signed, participants underwent blood collection followed by vaccination. On study days 1, 2 and 3 post-vaccination participants were contacted by the staff to evaluate the occurrence of solicited (local and systemic) and non-solicited adverse reactions. On study day 21 (+7) subjects returned to the clinical site for final safety assessments and blood collection to evaluate post-vaccination immunogenicity. The immunogenicity analyses were performed by means of hemagglutination inhibition (HI) assay. The immunogenicity endpoints were: seroprotection (SPR) and seroconversion (SCR) rates and the geometric mean HI antibody titer ratio (GMTR). The 2013 study was conducted at the Centro de Referência para Imunobiológicos Especiais (CRIE) and at the Centro de Pesquisa Clínica do Instituto da Criança, Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo while the 2014 and 2015 studies were conducted at CRIE. The vaccine composition followed the WHO recommendation for the Southern hemisphere seasonal influenza vaccine. Forty-seven healthy adults and 13 elderly participated in the 2013 study, 60 healthy adults and 60 elderly in the 2014 study, and 62 healthy adults and 57 elderly in the 2015 study. In the 2013, 2014 and 2015 studies, pain was the most frequent local adverse reaction and headache the most frequent systemic adverse reaction. All observed adverse reactions were classified as mild or moderate and none as severe. SPR >70% and SPR >60% were observed in adults and elderly, respectively, for the three vaccine viruses, in the 2013, 2014 and 2015 studies. SCR >40% was observed in adults, for the three vaccine viruses, only in the 2014 study and SCR >30% was observed in the elderly, for the three vaccine viruses, only in the 2013 and 2014 studies. GMTR >2.5 among adults, for the three vaccine viruses was only observed in the 2013 study and GMTR >2.0 was observed among elderly, for the three vaccine viruses, in the 2013, 2014 and 2015 studies. The 2013, 2014 and 2015 seasonal influenza vaccines produced by Instituto Butantan were safe and immunogenic according to the immunogenicity criteria defined by the European Medicines Agency (EMA).

5.
Acta paul. enferm ; 22(1): 31-36, jan.-fev. 2009.
Artigo em Português | LILACS-Express | LILACS, BDENF - Enfermagem | ID: lil-511490

RESUMO

OBJETIVO: Caracterizar o perfil de capacitação profissional do enfermeiro de um Complexo Hospitalar de Ensino, a partir da percepção das Diretoras de Enfermagem. MÉTODOS: Nesta pesquisa qualitativa utilizou-se o método do Estudo de Caso e adotou-se a técnica da entrevista semi-estruturada realizada com 12 colaboradores. RESULTADOS: Os dados coletados, analisados utilizando-se a Análise de Conteúdo, possibilitaram o resgate das Categorias Política Institucional, Política de Gerenciamento de Recursos Humanos e Elementos Intervenientes no Processo de Capacitação Profissional do Enfermeiro. CONCLUSÕES: Não há uma política institucional formalizada de capacitação do enfermeiro; a questão salarial é elemento dificultador para a capacitação; a contrapartida das instituições de ensino aparece como recurso para capacitação; dois Institutos não possuem Serviço de Educação Continuada e o perfil demandado é de um profissional com postura ética, conhecimento técnico-científico, capacidade de gerenciar sua equipe, assíduo, pontual e comprometido com a Instituição.


OBJECTIVE: To characterize the components of a capacitating program for nurses working in major teaching medical centers. METHODS: A case study approach was used to conduct this study. Data were collected through semi-structured interviews with 12 directors of nursing. Data were analyzed through content analysis. RESULTS: The findings consisted of the following themes: Institutional politics, human resources policies, and specific intervening elements of the professional capacitating program for nurses. CONCLUSIONS: There were no formal institutional policies for professional capacitation of nurses. The nurses' salary level was an element that made the implementation of a professional capacitating program for nurses difficult. Two medical centers did not have a department of continuing education. In addition, there was a need for capacitating nurses to: behave ethically; develop scientific, technical, and management knowledge; and, be assiduous, punctual, and committed to the institution.


OBJETIVO: Caracterizar el perfil de capacitación profesional del enfermero de un Complejo Hospitalario de Enseñanza, a partir de la percepción de las Directoras de Enfermería. MÉTODOS: en esta investigación cualitativa se utilizó el método del Estudio de Caso adoptándose la técnica de la entrevista semi-estructurada realizada con 12 colaboradores. RESULTADOS: Los datos recolectados, analizados por medio del Análisis de Contenido, posibilitaron el rescate de las Categorías Política Institucional, Política de Gerenciamiento de Recursos Humanos y Elementos Intervinientes en el Proceso de Capacitación Profesional del Enfermero. CONCLUSIONES: No hay una política institucional formalizada de capacitación del enfermero; la cuestión salarial es el elemento que dificulta la capacitación; la contrapartida de las instituciones de enseñanza aparece como recurso para capacitación; dos Institutos no poseen Servicio de Educación Continua y el perfil demandado es el de un profesional con postura ética, conocimiento técnico-científico, capacidad para gerenciar su equipo, asiduo, puntual y comprometido con la Institución.

6.
São Paulo; s.n; 2007. 163 p.
Tese em Português | LILACS, BDENF - Enfermagem | ID: biblio-1097425

RESUMO

No âmbito hospitalar o número de enfermeiros é significativo, atuando desde o âmbito assistencial até cargos de chefia e participação em assessorias. Todavia, para essa atuação, o conhecimento não é definitivo, sendo necessário que o profissional desenvolva aprendizagem contínua e atualizada. A presente pesquisa qualitativa teve como objetivo geral caracterizar um perfil de capacitação profissional do enfermeiro de um Complexo Hospitalar de ensino a partir da percepção das Diretoras de Divisão de Enfermagem dos Institutos que compõem o pólo central do Complexo Hospitalar do Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo, e como objetivos específicos: identificar a percepção das colaboradoras acerca do perfil de capacitação dos enfermeiros; conhecer as propostas que orientam essa capacitação; e analisar os elementos institucionais necessários para a efetivação desse processo. Optou-se pelo método do Estudo de Caso, cuja flexibilidade permite confirmar, modificar, ou ampliar o conhecimento sobre o objeto que estuda, contribuindo assim para a construção teórica do respectivo domínio do conhecimento. Foram colaboradoras do estudo as seis Diretoras de Divisão de Enfermagem do Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo e suas substitutas, totalizando doze colaboradoras. A coleta de dados foi realizada por meio de entrevistas semiestruturadas, após aprovação do estudo pelo Comitê de Ética em Pesquisa daEEUSP e da Comissão de Ética para Análise de Projetos de Pesquisa - CAPPesq do Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo, e assinatura do Termo de Consentimento Livre e Esclarecido pelas colaboradoras. Para análise dos dados foi adotada a técnica da Análise de Conteúdo de Bardin, que possibilitou o resgate das Categorias Política Institucional, Política de Gerenciamento de ) Recursos Humanos e Elementos Intervenientes do Processo de Capacitação Profissional do Enfermeiro. Os resultados mostraram que não há uma política institucional formalizada para a capacitação do enfermeiro em todos os Institutos; que a contratação de enfermeiros recém-formados e a questão salarial são elementos dificultadores para a capacitação; a contrapartida das instituições de ensino aparece como um recurso para atender às necessidades de capacitação do enfermeiro; dois Institutos não possuem Serviço de Educação Continuada; o perfil do profissional demandado, na concepção semelhante das colaboradoras, é de um profissional com postura ética, conhecimento técnico-científico, capacidade de gerenciar sua equipe, assíduo, pontual e comprometido com a Instituição. A Coordenação das Atividades de Enfermagem (CAENF), composta pelas diretoras de Divisão de Enfermagem dos Institutos, tem entre seus objetivos a proposta de montar um grupo/recurso para a capacitação e desenvolvimento do pessoal. Dessa forma depreende-se que existe empenho dos enfermeiros e das chefias deenfermagem no desenvolvimento da capacitação profissional. Entretanto, essa disposição não tem sido elemento suficiente para superar as dificuldades de ordem política e econômica que perpassam um Complexo Hospitalar Público.


In a hospital complex is significant the number of nurses working to assist people and also in the leadership jobs and participating in advisory tasks. However, for this type of work, knowledge is not definitive and the professional needs to develop continuous and updating learning. The present qualitative research had the general objective to characterize the profile of the professional capacitating program for nurses in a Teaching Hospital Complex, based on the six directors´ and their six substitutes' perception of the Nursing Division of the Institutes which take part of the central pole of the Hospital Complex of the Clinicas Hospital of the Faculty of Medicine of the São Paulo University (USP), totaling 12 collaborators. The specific objectives were to identify the collaborators' perception about the nurse's profile in the capacitating program and to know the proposals which oriented this process. The Study of a Case was the method of choice whose flexibility allowed to confirm, modify or to improve the knowledge on the studied object thus contributing for the theoretical construction of the respective knowledge domain. Data collection was carried out by means of semi-structured interviews after approval of the study made by the Ethic Committee in Research of the Nursing School at USP and of the Ethic Committee for Analysis of Research Projects of the Clinicas Hospital of the Faculty of Medicine of the São Paulo University and also the signature of the FreeInformed Consent by the collaborators. For analysis of data, the Bardin\'s Content Analysis was used which allowed to rescue the Institutional Policy Categories, Policy of Human Resources Management and the Intervening Elements of the Nurse's Professional Capacitating Program. The results showed that there is no formal institutional policy to capacitate the nurse in all the Institutes; employment of fresh graduate nurses and the remuneration policy are difficult elements in the capacitating program. The counterpart of the teaching institutions appears as a resource to assist the needs of the nurse capacitating program; two Institutes do not have a Continuing Education Program; the demanding profile according to the similar conception of the collaborators is a professional with ethic posture, scientifictechnical knowledge, and ability to deal with the team, assiduous, punctual and engaged with the Institution. The Coordination of the Nursing Activities composed by the directors of the Nursing Division of the Institutes aims to create a group/resource to capacitate and develop the personnel into the institution. Thus, we concluded that there is an effort by the nurses and nursing leadership to professional capacitate their staff, but this effort has not been a sufficient element to surpass their economic and political difficulties inherent to a Public Hospital Complex.


Assuntos
Humanos , Educação Continuada , Profissionais de Enfermagem
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