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OBJECTIVE: To describe the development of a website and the creation of a social network account about pediatric allergy/immunology with reliable information, to promote education and have a channel for patient-doctor contact. METHODS: This is a descriptive study. A survey was conducted with 93 patients (12 years and older) and caregivers of a Pediatric Allergy/Immunology outpatient clinic, to assess internet usage patterns of potential users. A webpage in Portuguese and an Instagram® account were launched in which it was created an area for patient-doctor communication in the pandemic context. RESULTS: Among 93 participants, 77% were female, 82% caregivers. Median age was 33.2 years, family income 403 dollars/month. The internet was accessed via smartphone by 81,7% of the participants; 76% reported using internet to access health information but 72% did not trust on the information from the internet, and 96% believed that an institutional site could provide meaningful information. From the website release in November 6, 2018 to January 20, 2022, it was counted 10,062 page views by 4,896 users; 55% were 18-34 years old, 70.2% female. Instagram® account gathered 882 followers. Website went through a period of instability during which access were not counted. Due to social isolation during COVID-19 pandemic, the website served as a tool for first response to help patients and doctors. CONCLUSIONS: Patients and caregivers of the Pediatric Allergy/Immunology service, consulted about digital tools, considered the information supported by a teaching/research institution timely and relevant. The website and Instagram® account have both performed well and shown good return in relation to hits, and results are continuously being evaluated. During COVID-19 pandemic, the website has been connecting patients/families and doctors.
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COVID-19 , Hipersensibilidade , Humanos , Feminino , Criança , Adulto , Adolescente , Adulto Jovem , Masculino , Pandemias , Brasil/epidemiologia , Pais , Rede SocialRESUMO
Abstract Objective: To describe the development of a website and the creation of a social network account about pediatric allergy/immunology with reliable information, to promote education and have a channel for patient-doctor contact. Methods: This is a descriptive study. A survey was conducted with 93 patients (12 years and older) and caregivers of a Pediatric Allergy/Immunology outpatient clinic, to assess internet usage patterns of potential users. A webpage in Portuguese and an Instagram® account were launched in which it was created an area for patient-doctor communication in the pandemic context. Results: Among 93 participants, 77% were female, 82% caregivers. Median age was 33.2 years, family income 403 dollars/month. The internet was accessed via smartphone by 81,7% of the participants; 76% reported using internet to access health information but 72% did not trust on the information from the internet, and 96% believed that an institutional site could provide meaningful information. From the website release in November 6, 2018 to January 20, 2022, it was counted 10,062 page views by 4,896 users; 55% were 18-34 years old, 70.2% female. Instagram® account gathered 882 followers. Website went through a period of instability during which access were not counted. Due to social isolation during COVID-19 pandemic, the website served as a tool for first response to help patients and doctors. Conclusions: Patients and caregivers of the Pediatric Allergy/Immunology service, consulted about digital tools, considered the information supported by a teaching/research institution timely and relevant. The website and Instagram® account have both performed well and shown good return in relation to hits, and results are continuously being evaluated. During COVID-19 pandemic, the website has been connecting patients/families and doctors.
RESUMO Objetivo: Descrever o desenvolvimento de um website e a criação de uma conta em rede social sobre alergologia/imunologia pediátrica com informações confiáveis, para promover educação e ter um canal de contato paciente-médico. Métodos: Trata-se de um estudo descritivo. Um questionário foi aplicado a 93 pacientes (12 anos de idade ou mais) e cuidadores frequentadores de um ambulatório de alergologia/imunologia pediátrica, para abordar o padrão de uso de internet de potenciais usuários. Lançou-se um website em português e uma página no Instagram®, nos quais foi criada, no contexto da pandemia, uma área para comunicação paciente-médico. Resultados: Dos 93 participantes, 77% eram mulheres, 82% cuidadores, com idade mediana de 33,2 anos e renda mensal de 403 dólares. A internet foi acessada via smartphone por 81,7% dos participantes; 76% relataram usar a internet para informações em saúde, mas 72% não confiavam nessa informação, e 96% acreditavam que um site institucional poderia prover informações seguras. Do lançamento do website em 6 de novembro de 2018 até 20 de janeiro de 2022, contabilizaram-se 10.062 visualizações de páginas por 4.896 usuários; 55% tinham idade entre 18 e 34 anos, 70,2% eram mulheres. A página no Instagram® reuniu 882 seguidores. O website apresentou período de instabilidade, sem registrar acessos. Em razão do isolamento social durante a pandemia de COVID-19, o website apresentou-se como ferramenta de primeira linha para auxiliar pacientes e médicos. Conclusões: Pacientes e cuidadores do ambulatório de Alergologia/Imunologia Pediátrica, consultados sobre ferramentas digitais, consideraram as informações fornecidas por uma instituição de ensino/pesquisa como oportunas e relevantes. O website e a página do Instagram® têm apresentado bom desempenho e visualização, e os resultados estão sendo continuamente avaliados. Durante a pandemia de COVID-19, o website tem conectado pacientes/familiares e médicos.
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BACKGROUND: Glycogen storage disease (GSD) type 1b is a multisystemic disease in which immune and infectious complications are present, in addition to the well-known metabolic manifestations of GSD. Treatment with granulocyte-colony stimulating factor (G-CSF) is often indicated in the management of neutropenia and inflammatory bowel disease. OBJECTIVE: To report on the demographics, genotype, clinical presentation, management, and complications of pediatric patients with glycogen storage disease type 1b (GSD 1b), with special attention to immune-related complications. METHODS: Retrospective case series of seven patients with GSD 1b diagnosed and followed at a tertiary university hospital in Brazil, from July/2000 until July/2016. RESULTS: Mean age at referral was fourteen months. Diagnosis of GSD 1b was based on clinical and laboratory findings and supported by genetic studies in five cases. All patients presented suffered from neutropenia, managed with G-CSF - specifically Filgrastim. Hospitalizations for infections were frequent. Two patients developed inflammatory bowel disease. Six patients remained alive, one died at age 14 years and 9 months. The mean age at the end of the follow-up was 11.5 years. Compliance to treatment was suboptimal: poor compliance to medications, starch and dietetic management of GSD were documented, and outpatient appointments were frequently missed. CONCLUSION: Managing GSD 1b is challenging not only for the chronic and multisystemic nature of this disease, but also for the additional demands related dietary restrictions, use of multiple medications and the need for frequent follow-up visits; furthermore in Brazil, the difficulties are increased in a scenario where we frequently care for patients with unfavorable socioeconomic status and with irregular supply of medications in the public health system.
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Doença de Depósito de Glicogênio Tipo I , Neutropenia , Adolescente , Brasil , Criança , Doença de Depósito de Glicogênio Tipo I/complicações , Doença de Depósito de Glicogênio Tipo I/terapia , Fator Estimulador de Colônias de Granulócitos , Humanos , Estudos RetrospectivosRESUMO
A formação do aluno no curso de Medicina precisa se aproximar dos campos de prática vivenciados pelo médico atualmente. Este estudo objetivou caracterizar as experiências educacionais dos internos dentro de atividades em Atenção Primária, Secundária e Terciária à saúde, com vistas a otimizá-las. Inicialmente, foi descrita a criação de um estágio em atendimento secundário, antes inexistente na instituição, e avaliada a percepção dos alunos envolvidos. Posteriormente, foram caracterizados os atendimentos prestados pelos alunos em três cenários (primário, secundário e terciário) durante 30 dias. A criação do estágio na Unidade de Pronto Atendimento foi bem recebida pelos alunos, que sentiram necessidade de investir mais carga horária neste cenário. Foram avaliadas 201 consultas realizadas por internos, sendo a maioria na Atenção Primária. Houve grande diversificação dos motivos das consultas conforme o cenário de prática, e a preceptoria do interno ocorreu em todos os atendimentos. Concluímos que os diferentes cenários realmente oferecem oportunidades de aprendizado complementares que devem ser valorizadas institucionalmente.
There is a need for undergraduate medical training to bring students closer to the real clinical settings they will face early in their professional lives. This study aims to review and improve student interns’ experience in different clinical scenarios: primary health care; secondary outpatient clinic (a new rotation) and the emergency room of a tertiary hospital. This new rotation is an opportunity for students to see acutely ill patients before they are referred to the hospital. Following a 30-day period, the students’ perceptions were surveyed and, based on student records, a list of all the patients (and diagnoses) which they saw was composed. The final result was a list of clinical conditions from these three different scenarios. Students acknowledge that the new rotation added to their clinical learning, especially because it was based on non-referred patients. They also felt that 4 hours/week is not enough and asked for more time in this rotation. During their 30 days, 7 students performed 201 consultations, most of them in the primary health care setting. There was a wide variety of clinical cases, which was possible because the students rotate among those three settings. Some experiences were only possible due to the new outpatient clinic rotation, indicating how this approach offer complementary learning opportunities which should be institutionally valued.