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  • O desenvolvimento de uma ferramenta tecnológica de recolha de dados aplicada ao sistema EVITA
    Publication . Alves, Tatiana; Tavares, Pedro; Silva, Susana; Braz, Paula; Neto, Mariana; Mexia, Ricardo; Matias Dias, Carlos
    Os Acidentes Domésticos e de Lazer (ADL) enquanto fenómeno de Saúde Pública reconhecido pelas principais organizações internacionais e nacionais, com impacte na vida dos indivíduos, suas famílias e sistema de saúde, têm efeitos económicos e sociais relevantes, conduzindo a eventual perda de produtividade e interferência na vida em sociedade. Em Portugal, a caracterização epidemiológica dos ADL e o conhecimento do contexto em que ocorrem é possível através do sistema EVITA - Epidemiologia e Vigilância dos Traumatismos e Acidentes - instrumento de observação e vigilância sedeado no Instituto Nacional de Saúde Doutor Ricardo Jorge, IP. Sendo o sistema EVITA alimentado pelo registo de ADL realizados nos serviços de urgência (SU) dos hospitais do Serviço Nacional de Saúde (SNS) com sistema SONHO, o desenho de um sistema similar de recolha de dados aplicável aos hospitais do SNS sem este sistema constitui um avanço relevante. Objetivo: apresentar a ferramenta desenvolvida para a recolha de dados sobre ADL, que compreende o registo e integração de informação em tempo real, de forma estruturada, numa base de dados, descrevendo a metodologia utilizada. Em parceria com o Instituto Superior Técnico, na área da Engenharia Biomédica, no âmbito da disciplina “Projeto Integrador” foi desenvolvida a interface do aplicativo em Python, utilizando um framework de GUI (Graphical User Interface) embutido na biblioteca padrão da linguagem – o Tkinter; e a base de dados foi criada recorrendo à linguagem de programação SQL. Foi concebida uma aplicação modular de desktop – um ficheiro executável denominado “interface.exe” – que se conecta a uma base de dados guardada num ficheiro local “BaseDados.db”, no mesmo diretório. A interface gráfica da aplicação contemplou diferentes campos de resposta organizados por segmentos de informação referentes, por ordem do fluxo de preenchimento, à admissão no SU, ao utente e ao acidente. Incluíram-se campos abertos e campos de resposta múltipla, facilitando ao utilizador a escolha da opção que melhor descreve o ADL. Nestes campos, a resposta pode ser desagregada a dois níveis, em que a seleção de uma opção mais genérica num 1º nível antecede o aparecimento de um novo campo selecionável, um 2º nível, com opções relacionadas com o primeiro, permitindo especificar as condições de ocorrência do ADL. Esta aplicação, permitiu o desenvolvimento de novas funcionalidades na visualização dos registos efetuados e que contribuíram para a otimização da sua utilização. Este projeto, permitiu o desenvolvimento de uma aplicação de recolha de dados sobre ADL passível de aplicar em hospitais do SNS que não utilizam o sistema de administração SONHO. Num futuro próximo prevê-se o desenvolvimento de protejo piloto para testar a exequibilidade desta metodologia, e assim alargar o âmbito do EVITA a todos os hospitais a nível nacional.
    2022-11-12Conference object Restricted access Show more
  • Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey
    Publication . Marcus, Elena; Latos-Bielenska, Anna; Jamry-Dziurla, Anna; Barišić, Ingeborg; Cavero-Carbonell, Clara; Den Hond, Elly; Garne, Ester; Genard, Lucas; Santos, Ana João; Lutke, LRenée; Matias Dias, Carlos; Neergaard Pedersen, Christina; Neville, Amanda J.; Niemann, Annika; Odak, Ljubica; Pierini, Anna; Rico, Juan; Rissmann, Anke; Rankin, Judith; Morris, Joan K.
    Background: Parents of children who have a congenital anomaly can experience significant worry about their child's health. Access to clear, helpful, and trustworthy information can provide a valuable source of support. In this study the aim was to explore the information needs of parents/carers of children with congenital anomalies across Europe. Method: A cross-sectional online survey was developed in nine languages to measure parents' information needs, including: (1) the 'helpfulness'/'trustworthiness' of information received from eight relevant sources, and (2) overall satisfaction with information received. Parents/carers of children (0-10 years) with cleft lip, spina bifida, congenital heart defect [CHD] requiring surgery, and/or Down syndrome were recruited online via relevant organisations in 10 European countries from March-July 2021. Quantitative analyses using multivariable logistic regressions were performed. Results: One thousand seventy parents/carers of children with a cleft lip (n = 247), spina bifida (n = 118), CHD (n = 366), Down syndrome (n = 281), and Down syndrome with CHD (n = 58) were recruited in Poland (n = 476), the UK (n = 120), Germany (n = 97), the Netherlands/Belgium (n = 74), Croatia (n = 68), Italy (n = 59), other European countries (n = 92), and not specified/non-European countries (n = 84). Most participants were mothers (92%) and aged 31-40 years (71%). Participants were most likely to rate support groups (63%), patient organisations (60%), specialist doctors/nurses (58%), and social media (57%) as 'very helpful' information sources. 'Very trustworthy' ratings remained high for specialist doctors/nurses (61%), however, they declined for support groups (47%), patient organisations (48%), and social media (35%). Germany had the highest proportion of participants who were 'very satisfied' (44%, 95% CI = 34%-54%) with information, whereas this percentage was lowest in Croatia (11%, 95% CI = 3%-19%) and Poland (15%, 95% CI = 11%-18%). Parents of children with Down syndrome had significantly lower satisfaction ratings than parents of children with CHD; 13% (95% CI = 8%-18%) reported being 'very satisfied' compared to 28% (95% CI = 23%-33%) in the CHD group. Conclusions: Findings suggest that informal sources of information (e.g. support groups) are of value to parents, however, they are not deemed as trustworthy as specialist medical sources. Satisfaction ratings differed across countries and by anomaly, and were particularly low in Croatia and Poland, as well as for parents of children with Down syndrome, which warrants further investigation.
    2022-11-12Journal article Open access Show more
  • Food Composition Data and Tools Online and Their Use in Research and Policy: EuroFIR AISBL Contribution in 2022
    Publication . Durazzo, A.; Astley, S.; Kapsokefalou, M.; Costa, H.S.; Mantur-Vierendeel, A.; Pijls, L.; Bucchini, L.; Glibetić, M.; Presser, K.; Finglas, P.
    Food, nutrition, and health are linked, and detailed knowledge of nutrient compositions and bioactive characteristics is needed to understand these relationships. Additionally, increasingly these data are required by database systems and applications. This communication aims to describe the contribution to databases and nutrition fields as well as the activities of EuroFIR AISBL; this member-based, non-profit association was founded to ensure sustained advocacy for food information in Europe and facilitate improved data quality, storage, and access as well as encouraging wider exploitation of food composition data for both research and commercial purposes. In addition to the description of its role and main objectives, a snapshot of EuroFIR AISBL’s activities over the years is also given using a quantitative research literature analysis approach. The focus of this communication is to provide descriptions and updates of EuroFIR’s online tools, i.e., FoodEXplorer, eBASIS, and PlantLIBRA, by highlighting the main uses and applications. Integrating food-related infrastructures and databases, following standardized and harmonized approaches, and considering interoperability and metrological principles are significant challenges. Ongoing activities and future plans of EuroFIR AISBL are highlighted, including, for instance, work within the Food Nutrition Security Cloud (FNSCloud) to make food, nutrition, and (food) security data more findable, accessible, interoperable, and ultimately reusable.
    2022-11-12Journal article Open access Show more