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1.
Eur J Public Health ; 2020 Mar 24.
Artigo em Inglês | MEDLINE | ID: mdl-32206800

RESUMO

BACKGROUND: Population data, such as mortality and morbidity statistics, are essential for many reasons, including giving context for research, supporting action on health determinants, formulation of evidence-based policy for health care and outcome evaluation. However, when considering children, it is difficult to find such data, despite children comprising one-fifth of the European population and being in a key formative life stage and dependent on societal support. Moreover, it would be expected that there should be confidence in the key child health data available, with little to no discrepancy between recognized health statistic databases. METHODS: This study explored the main health databases in or including Europe to collate child mortality data, for both all-cause and specific-cause mortality. Tables were constructed for comparison of values and rankings. RESULTS: The results show that there are major differences in reported mortality data between two prominent health statistic databases, difference in coding systems, and unannounced changes within one of the databases. CONCLUSIONS: The lack of health data for children seems compounded by challenges to the trust and credibility, which are vital if these data are to have utility. Children and society are the losers, and resolution is needed as a priority.

2.
Heart ; 2020 Mar 23.
Artigo em Inglês | MEDLINE | ID: mdl-32205313

RESUMO

OBJECTIVE: To describe the intervention spectrum, complexity, and safety outcomes of catheter-based interventions in a contemporary adult congenital heart disease (ACHD) tertiary cohort. METHODS: All patients over 16 years who underwent a catheter-based intervention for ACHD in our centre between 2000 and 2016 were included. Baseline demographics, clinical characteristics, indications for and complexity of intervention, procedural complications and early and mid-term mortality were analysed. RESULTS: Overall, 1644 catheter-based interventions were performed. Intervention complexity ranged from simple (67.5%) to intermediate (26.4%) and to high (6.1%). Commonly performed procedures were atrial septal defect (33.4%) and patent foramen ovale closure (26.1%) followed by coarctation of the aorta (11.1%) and pulmonary artery interventions (7.0%). Age at index intervention was 40±16 years, 758 (46.1%) patients were male, 73.2% in New York Heart Association (NYHA) class I, 20.2% in NYHA class II, whereas 6.6% in NYHA class III/IV. In-hospital mortality was 0.7%. Median postinterventional length of stay was 1 day. Complications occurred in 129 (7.9%) with major adverse events in 21 (1.3%). One-year postintervention survival rates were 98.7% (95% CI 98.2 to 99.2). Over the study period, there was a notable shift in intervention complexity, with a predominance of simple procedures performed in early years and more complex procedures in later years. Furthermore, the case mix during the study broadened (p<0.001) with new catheter-based interventions and a more individualised approach to therapy. CONCLUSION: This study shows an increasing complexity and expanding variability of ACHD catheter-based interventions, associated with low major complications, short hospital stays and low early and mid-term mortality. Ongoing investment in ACHD catheter interventions is warranted.

3.
Artigo em Inglês | MEDLINE | ID: mdl-32050034

RESUMO

BACKGROUND: Children have the right to health and countries a duty under the United Nations Convention on the Rights of the Child to facilitate this. The European Union has emphasized the importance of investing in children, but at times this seems more wish than pragmatism. Furthermore, European statistical systems do not provide any relevant data, and the degree of unmet need has hitherto been unknown. However, new ad hoc household survey data have now been published by Eurostat showing the percentage of children with a purported unmet medical or dental need and the expressed reasons for this. METHOD: This paper critically reviews these data on children with a reported unmet medical or dental need to create an indication of the number of European children with unmet medical and dental needs, and the contributory factors. RESULTS: This paper calculates that some 1 million European children can be estimated to have an unmet medical need and 2 million children an unmet dental need, though the survey approach has some weaknesses. A probable overestimate of children affected in sample households offsets the likely failure to capture data about children in institutions, homeless, or in fractured families, or about multiple needs. The reported reasons for not obtaining treatments are a valuable first step in highlighting an important issue for Europe's children-measurement of service accessibility. CONCLUSION: Potentially over 3 million European Union children are failing to have their health needs and their rights met. If the incoming European Commission is serious about its predecessor's promise to invest in children and to take seriously their rights, action is needed to improve quantification of unmet need and to reduce suffering and potential lasting damage.

4.
J Neurochem ; : e14958, 2020 Jan 16.
Artigo em Inglês | MEDLINE | ID: mdl-31945187

RESUMO

Nε-lysine acetylation of nascent glycoproteins within the endoplasmic reticulum (ER) lumen regulates the efficiency of the secretory pathway. The ER acetylation machinery consists of the membrane transporter, acetyl-CoA transporter 1 (AT-1/SLC33A1), and two acetyltransferases, ATase1/NAT8B and ATase2/NAT8. Dysfunctional ER acetylation is associated with severe neurological diseases with duplication of AT-1/SLC33A1 being associated with autism spectrum disorder, intellectual disability, and dysmorphism. Neuron-specific AT-1 over-expression in the mouse alters neuron morphology and function, causing an autism-like phenotype, indicating that ER acetylation plays a key role in neurophysiology. As such, characterizing the molecular mechanisms that regulate the acetylation machinery could reveal critical information about its biology. By using structure-biochemistry approaches, we discovered that ATase1 and ATase2 share enzymatic properties but differ in that ATase1 is post-translationally regulated via acetylation. Furthermore, gene expression studies revealed that the promoters of AT-1, ATase1, and ATase2 contain functional binding sites for the neuron-related transcription factors cAMP response element-binding protein and the immediate-early genes c-FOS and c-JUN, and that ATase1 and ATase2 exhibit additional modes of transcriptional regulation relevant to aging and Alzheimer's disease. In vivo rodent gene expression experiments revealed that Atase2 is specifically induced following activity-dependent events. Finally, over-expression of either ATase1 or ATase2 was sufficient to increase the engagement of the secretory pathway in PC12 cells. Our results indicate important regulatory roles for ATase1 and ATase2 in neuron function with induction of ATase2 expression potentially serving as a critical event that adjusts the efficiency of the secretory pathway for activity-dependent neuronal functions.

5.
Arch Dis Child ; 105(1): 40-46, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31270093

RESUMO

BACKGROUND AND OBJECTIVES: Adolescent sexual and reproductive health and rights (SRHR) are of particular relevance given their potential short-term or long-term health consequences. This study evaluates recommendations and policies regarding access to care in this area in 31 European countries (European Union (EU) plus Iceland, Norway and Switzerland). METHODS: As part of the EU funded Models of Child Health Appraised project, data were gathered using a 43-item questionnaire sent to experts responsible for collecting information in each country. RESULTS: Ten countries have not developed any formal policy or recommendation that guarantee the respect of confidentiality and the possibility of consulting a physician without parents knowing. Nearly half of the countries do not have centres specialised in adolescent healthcare, tackling comprehensive health issues or focusing specifically on SRH. Access to emergency contraception and information regarding pregnancy, including testing, is easy in most countries. However, oral contraception is delivered free of charge in only 10 countries. Twenty-three countries do not meet current standards in terms of providing policy-based pregnancy care, and only 13 have set up special programmes for pregnant adolescents. In only seven countries can adolescents definitely have their pregnancy terminated without their parents knowing (and in another seven countries in selected situations). CONCLUSION: The provision and availability of adolescent-friendly SRHR care are far from optimal in around half of the surveyed countries. These results call for the review and implementation of policies, specialised healthcare centres and training initiatives for primary care providers.

6.
Lancet Child Adolesc Health ; 3(12): e14, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31701896
7.
Eur J Public Health ; 2019 Oct 23.
Artigo em Inglês | MEDLINE | ID: mdl-31642905

RESUMO

BACKGROUND: Low childhood immunization rates in Europe are causing concern and have triggered several EU initiatives. However, these are counter-factual as they make immunization a stand-alone issue and cut across best practice in integrated child health services. They also focus unduly on 'anti-vax' pressures, generalize 'vaccine hesitancy' and overlook practical difficulties and uncertainties encountered by parents in real world situations about presenting children for immunization. Meanwhile European expertize in child health electronic record systems and relevant standards are ignored despite their being a potentially sound foundation ripe for enhancement. METHODS: Situation and literature reviews, and cohesion of two European research projects, led to shared investigation. As a result, two cross-sectoral expert workshops were held to consider digital health standards for harmonizing integrated preventive child health including immunization, and the work of other stakeholders such as the World Health Organisation and the European Centre for Disease Control. RESULTS: Progress in child health information models and digital health standards was assessed, areas needing further standards development identified and desirable steps towards innovation in service delivery and record keeping agreed. CONCLUSION: The European Commission, member states and child health stakeholders should take an integrated approach to child health with immunization as a component. Service delivery should be sensitive to parental concerns and challenges, and the way child- and family-centric data are recorded and used should be enhanced. Services should be enabled by the International Patient Summary and related electronic health record standards and linkages, and evaluated to assess most effective systems and practice.

10.
Stud Health Technol Inform ; 262: 154-157, 2019 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-31349289

RESUMO

Immunisation is a key preventive health measure for children. E-health applications have been used for over 50 years, yet still there is no harmonization or standardization, while uncoordinated policy initiatives proliferate. Two EU research projects (Trillium II and MOCHA) have come together with experts and stakeholders, and used EU-wide situation analysis research to seek to stimulate development of data and process standards as a harmonizing force in a supporting policy environment, putting the child as the central data collation unit.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Saúde da População , Vacinação , Criança , Europa (Continente) , Humanos
11.
Stud Health Technol Inform ; 262: 158-161, 2019 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-31349290

RESUMO

A potentially useful resource for health promotion and guidance is eHealth. However, this field also presents challenges, and one of the most important obstacles is the lack of regulation, without which citizens including young people may be exposed to misleading or risky information and applications. The aim of this study was to investigate the extent of accreditation processes for mobile applications (apps) and websites in European countries, to determine whether regulation is on the agenda. A survey was conducted in 28 European Member States and 2 European Economic Area countries, between 2017 and 2018. Twenty-seven responses were collected. Six countries have accreditation processes for apps and eight countries have accreditation processes for websites. However, processes are fragmented and there is variety within and amongst countries.


Assuntos
Acreditação , Aplicativos Móveis , Telemedicina , Europa (Continente) , Promoção da Saúde
12.
BMC Public Health ; 19(1): 839, 2019 Jun 27.
Artigo em Inglês | MEDLINE | ID: mdl-31248395

RESUMO

BACKGROUND: The main objective of this study was to explore the contextual determinants of child health policies. METHODS: The Horizon 2020 Models of Child Health Appraised (MOCHA) project has one Country Agent (CA) in all 30 EU and EEA countries. A questionnaire designed by MOCHA researchers as a semi-structured survey instrument asked CAs to identify and report the predominating public and professional discussions related to child health services within the last 5 years in their country and the various factors which may have influenced these. The survey was issued to CAs following validation by an independent Expert Advisory Board. The data were collected between July and December 2016. The data was qualitatively analysed using software Nvivo11 for data coding and categorization and constructing the scheme for identified processes or elements. RESULTS: Contextual determinants of children's health care and policy were grouped into four categories. 1) Socio-cultural determinants: societal activation, awareness, communication, trust, freedom, contextual change, lifestyle, tolerance and religion, and history. 2) Structural determinants which were divided into: a) external determinants related to elements indirectly correlated with health care and b) internal determinants comprising interdependent health care and policy processes. 3) International determinants such as cross-nationality of child health policy issues. 4) The specific situational determinants: events which contributed to intensification of debates which were reflected by behavioural, procedural, institutional and global factors. CONCLUSIONS: The influence of context across European countries, in the process of children's health policy development is clearly evident from our research. A number of key categories of determinants which influence child health policy have been identified and can be used to describe this context. Child health policy is often initiated in reaction to public discontentment. The multiple voices of society resulted, amongst others, in the introduction of new procedures, action plans and guidelines; raising levels of awareness, intensifying public scrutiny, increasing access and availability of services and provoking introduction of structural changes or withdrawing unfavourable changes.


Assuntos
Saúde da Criança , Política de Saúde , Formulação de Políticas , Criança , Serviços de Saúde da Criança , Europa (Continente) , Humanos , Pesquisa Qualitativa , Inquéritos e Questionários
13.
J Child Health Care ; 23(3): 343-357, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31132868

RESUMO

Children's rights to autonomy of choice are differently expressed throughout Europe. We explored differences regarding expressions of respect for children's autonomy throughout Europe, using the procedure of human papillomavirus (HPV) vaccination offer as indicator. We used a mixed methods approach, utilizing an expert survey within the frame of "Models of Child Health Appraised" (MOCHA), among all 30 European Union (EU) and European Economic Area states. A questionnaire was designed using vignettes regarding the vaccine provision. Thirty MOCHA country agents were invited to respond from June 2017 to April 2018. In total, 28 country agents responded. We studied the following themes: (i) provision of informed consent, (ii) parental and medical paternalism, (iii) relevance of the child's chronological age or maturity, and (iv) vaccination programs targeting boys. These are being handled differently across the region. We explored associations of these implemented practices with the national vaccine coverage rate across Europe. We used the processes of HPV vaccination to study child's autonomy, the paradigm change toward libertarian paternalism and issues of sex-equity. Interestingly, greater respect for children's autonomy tends to be associated with medium or high vaccination coverage rates and lower respect with lower rates. Respect and empowerment seem to have practical as well as moral benefits. Identifying and transferring the most suitable ethical approaches is crucial and should be strengthened.

14.
Yearb Med Inform ; 28(1): 128-134, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31022752

RESUMO

OBJECTIVES: This paper draws attention to: i) key considerations for evaluating artificial intelligence (AI) enabled clinical decision support; and ii) challenges and practical implications of AI design, development, selection, use, and ongoing surveillance. METHOD: A narrative review of existing research and evaluation approaches along with expert perspectives drawn from the International Medical Informatics Association (IMIA) Working Group on Technology Assessment and Quality Development in Health Informatics and the European Federation for Medical Informatics (EFMI) Working Group for Assessment of Health Information Systems. RESULTS: There is a rich history and tradition of evaluating AI in healthcare. While evaluators can learn from past efforts, and build on best practice evaluation frameworks and methodologies, questions remain about how to evaluate the safety and effectiveness of AI that dynamically harness vast amounts of genomic, biomarker, phenotype, electronic record, and care delivery data from across health systems. This paper first provides a historical perspective about the evaluation of AI in healthcare. It then examines key challenges of evaluating AI-enabled clinical decision support during design, development, selection, use, and ongoing surveillance. Practical aspects of evaluating AI in healthcare, including approaches to evaluation and indicators to monitor AI are also discussed. CONCLUSION: Commitment to rigorous initial and ongoing evaluation will be critical to ensuring the safe and effective integration of AI in complex sociotechnical settings. Specific enhancements that are required for the new generation of AI-enabled clinical decision support will emerge through practical application.


Assuntos
Inteligência Artificial , Sistemas de Apoio a Decisões Clínicas , Estudos de Avaliação como Assunto , Aprendizado de Máquina , Avaliação de Programas e Projetos de Saúde/métodos
16.
Inquiry ; 56: 46958019833869, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30845863

RESUMO

To adopt and implement innovative good practices across the European Union requires developing policies for different political and constitutional contexts. Health policies are mostly decided by national political processes at different levels. To attain effective advice for policy making and good practice exchange, one has to take different models of governance for health into account. We aimed to explore which concepts of governance research are relevant for implementing child health policies in a European Union context. We argue that taking into account the insights of good intersectoral and multilevel governance in research and practice is essential and promising for future analyses. These governance concepts help to understand what actors and institutions are potentially of relevance for developing and implementing child-centric health care approaches not only within health care but also outside health care. The framework we developed has the potential to advise on and thus support effectively the spreading and implementation of good practices of child-centric health policy approaches across the European Union. With this heuristic framework, the variety of relevant stakeholders and institutions can better be mapped and taken into account in implementation processes. Also, the normative side-particularly stressing values that make governance "good governance"-is to be taken into account.


Assuntos
Saúde da Criança , Política de Saúde , Heurística , Formulação de Políticas , Atenção Primária à Saúde , Criança , Tomada de Decisões , União Europeia , Humanos , Política
17.
Child Care Health Dev ; 45(3): 364-370, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30874322

RESUMO

BACKGROUND: In the European context the awareness of societal responsibility for children's health has increased with greater attention to children's rights and child empowerment processes. Child health issues are considered particularly sensitive; thus, they often provoke strong societal reactions, which, as a consequence, influence national health policies across Europe. Effectiveness of societal influences increases with the involvement of various actors in the context. METHODS: A qualitative approach was used to identify the level of societal involvement in health decision-making. A questionnaire was sent to the Country Agents (CAs) of the Models of Child Health Appraised (MOCHA) project. CAs are contact points in each of the 30 participating in the project countries and were asked to identify strong public and professional discussions related to child health services in their countries. Data collection was undertaken between July and December 2016. RESULTS: Based on 71 case studies, we identified eight thematic patterns, which characterize societal reactions to the currently worrisome child health issues across Europe. We devoted our attention to the three most controversial: child vaccination, child poverty and child abuse. The cases described by the CAs show the broad perspective in the perception of child health problems. Child health issues involve the public and raise nationwide debates. Public concerns were directly or indirectly related to child health and depicted the national overtone. CONCLUSIONS: Concerns in Europe about child health care are twofold: they are devoted to systemic issues (indirect patient orientation) and to child health and well-being (direct patient orientation). The phenomenon of societal responsibility for children's health is important for the support of public acceptance of child health policy.

18.
BMJ Evid Based Med ; 24(4): 155-161, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30765384

RESUMO

Early recognition, identification and treatment of children with attention deficit hyperactivity disorder (ADHD) can reduce detrimental outcomes and redirect their developmental trajectory. We aimed to describe variations in age of ADHD diagnosis and stimulant prescribing among general practitioner practices in a nationwide network and identify child, parental, household and general practice factors that might account for these variations. Cross-sectional study of children aged under 19 years registered within a general practice in the Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC) network in 2016, RCGP RSC has a household key allowing parent and child details to be linked. Data from 158 general practices and 353 774 children under 19 were included. The mean age of first ADHD diagnosis was 10.5 years (95% CI 10.1 to 10.9, median 10, IQR 9.0-11.9) and the mean percentage of children with ADHD prescribed stimulant medications among RCGP RSC practices was 41.2% (95% CI 38.7 to 43.6). There was wide inter-practice variation in the prevalence of diagnosis of ADHD, the age of diagnosis and stimulant prescribing. ADHD diagnosis is more likely to be made later in households with a greater number of children and with a larger age difference between adults and children. Stimulant prescribing for children with ADHD was higher in less deprived practices. Older parents and families with more children fail to recognise ADHD and may need more support. Practices in areas of higher socio-economic status are associated with greater prescribing of stimulants for children with ADHD.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Estimulantes do Sistema Nervoso Central/uso terapêutico , Padrões de Prática Médica , Adolescente , Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , Criança , Pré-Escolar , Estudos Transversais , Bases de Dados Factuais , Feminino , Humanos , Masculino , Padrões de Prática Médica/estatística & dados numéricos , Reino Unido
19.
BMJ Open ; 9(1): e024372, 2019 01 24.
Artigo em Inglês | MEDLINE | ID: mdl-30679295

RESUMO

OBJECTIVES: Respiratory infections are associated with acute exacerbations of asthma and accompanying morbidity and mortality. In this study we explore inter-practice variations in respiratory infections in children with asthma and study the effect of practice-level factors on these variations. DESIGN: Cross-sectional study. SETTING: We analysed data from 164 general practices in the Royal College of General PractitionersResearch and Surveillance Centresentinel network in England. PARTICIPANTS: Children 5-12 years. INTERVENTIONS: None. In this observational study, we used regression analysis to explore the impact of practice-level determinants on the number of respiratory infections in children with asthma. PRIMARY AND SECONDARY OUTCOME MEASURES: We describe the distribution of childhood asthma and the determinants of upper/lower respiratory tract infections in these children. RESULTS: 83.5% (137/164) practices were in urban locations; the mean number of general practitioners per practice was 7; and the mean duration since qualification 19.7 years. We found almost 10-fold difference in the rate of asthma (1.5-11.8 per 100 children) and 50-fold variation in respiratory infection rates between practices. Larger practices with larger lists of asthmatic children had greater rates of respiratory infections among these children. CONCLUSION: We showed that structural/environmental variables are consistent predictors of a range of respiratory infections among children with asthma. However, contradictory results between measures of practice clinical care show that a purely structural explanation for variability in respiratory infections is limited. Further research is needed to understand how the practice factors influence individual risk behaviours relevant to respiratory infections.


Assuntos
Asma/epidemiologia , Medicina Geral , Infecções Respiratórias/epidemiologia , Bronquiolite/epidemiologia , Bronquite/epidemiologia , Criança , Pré-Escolar , Resfriado Comum/epidemiologia , Estudos Transversais , Inglaterra/epidemiologia , Feminino , Humanos , Masculino , Faringite/epidemiologia , Pneumonia/epidemiologia , Escarlatina/epidemiologia , Infecções Estreptocócicas/epidemiologia , População Urbana/estatística & dados numéricos
20.
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