69 research outputs found

    Atrioventricular septal defects among infants in Europe: a population-based study of prevalence, associated anomalies, and survival

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    Abstract Objective To describe the epidemiology of chromosomal and non-chromosomal cases of atrioventricular septal defects in Europe. Methods Data were obtained from EUROCAT, a European network of population-based registries collecting data on congenital anomalies. Data from 13 registries for the period 2000-2008 were included. Results There was a total of 993 cases of atrioventricular septal defects, with a total prevalence of 5.3 per 10,000 births (95% confidence interval 4.1 to 6.5). Of the total cases, 250 were isolated cardiac lesions, 583 were chromosomal cases, 79 had multiple anomalies, 58 had heterotaxia sequence, and 23 had a monogenic syndrome. The total prevalence of chromosomal cases was 3.1 per 10,000 (95% confidence interval 1.9 to 4.3), with a large variation between registers. Of the 993 cases, 639 cases were live births, 45 were stillbirths, and 309 were terminations of pregnancy owing to foetal anomaly. Among the groups, additional associated cardiac anomalies were most frequent in heterotaxia cases (38%) and least frequent in chromosomal cases (8%). Coarctation of the aorta was the most common associated cardiac defect. The 1-week survival rate for live births was 94%. Conclusion Of all cases, three-quarters were associated with other anomalies, both chromosomal and non-chromosomal. For infants with atrioventricular septal defects and no chromosomal anomalies, cardiac defects were often more complex compared with infants with atrioventricular septal defects and a chromosomal anomaly. Clinical outcomes for atrioventricular septal defects varied between regions. The proportion of termination of pregnancy for foetal anomaly was higher for cases with multiple anomalies, chromosomal anomalies, and heterotaxia sequenc

    Unlocking the mechanisms of change in the MAMAACT intervention to reduce ethnic disparity in stillbirth and newborns' health: integration of evaluation findings

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    Ethnic disparities in stillbirth exist in Europe and suboptimal care due to miscommunication is one contributing cause. The MAMAACT intervention aimed to reduce ethnic disparity in stillbirth and newborns' health through improved management of pregnancy complications. The intervention encompassed training of antenatal care midwives in cultural competencies and intercultural communication combined with health education materials for the expecting parents about symptoms of pregnancy complications. The evaluation consisted of a qualitative in-depth implementation analysis and a process evaluation embedded in a cluster randomized trial including 19 of 20 maternity wards in Denmark. In this article, the findings from the different evaluation perspectives are integrated. The integration follows the principles of realist evaluation by analyzing to what extent the MAMAACT activities were generating mechanisms of change in interaction with the context. The integration analysis shows that the health education materials in the MAMAACT intervention contributed to heightened health literacy concerning pregnancy complications among pregnant women. Additionally, the training of midwives in cultural competency and intercultural communication raised awareness among midwives. Nonetheless, the exclusive emphasis on midwives and the inflexibility in care provision hindered them from changing their communication practices. To enhance the cultural competence in maternity care, it is essential to implement more comprehensive initiatives involving healthcare professionals in maternity care at all levels, from pregraduate to postgraduate. Adequate interpreter services and management support should also be ensured. Currently, the Danish antenatal care system faces challenges including inadequate information transfer between healthcare sectors, insufficient differentiation of care, and inflexibility in midwife scheduling. This results in a lack of responsiveness to the individual needs of women with immigrant backgrounds, potentially reproducing health inequities

    Changes over time in characteristics, resource use and outcomes among ICU patients with COVID-19-A nationwide, observational study in Denmark

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    BACKGROUND: Characteristics and care of intensive care unit (ICU) patients with COVID‐19 may have changed during the pandemic, but longitudinal data assessing this are limited. We compared patients with COVID‐19 admitted to Danish ICUs in the first wave with those admitted later. METHODS: Among all Danish ICU patients with COVID‐19, we compared demographics, chronic comorbidities, use of organ support, length of stay and vital status of those admitted 10 March to 19 May 2020 (first wave) versus 20 May 2020 to 30 June 2021. We analysed risk factors for death by adjusted logistic regression analysis. RESULTS: Among all hospitalised patients with COVID‐19, a lower proportion was admitted to ICU after the first wave (13% vs. 8%). Among all 1374 ICU patients with COVID‐19, 326 were admitted during the first wave. There were no major differences in patient's characteristics or mortality between the two periods, but use of invasive mechanical ventilation (81% vs. 58% of patients), renal replacement therapy (26% vs. 13%) and ECMO (8% vs. 3%) and median length of stay in ICU (13 vs. 10 days) and in hospital (20 vs. 17 days) were all significantly lower after the first wave. Risk factors for death were higher age, larger burden of comorbidities (heart failure, pulmonary disease and kidney disease) and active cancer, but not admission during or after the first wave. CONCLUSIONS: After the first wave of COVID‐19 in Denmark, a lower proportion of hospitalised patients with COVID‐19 were admitted to ICU. Among ICU patients, use of organ support was lower and length of stay was reduced, but mortality rates remained at a relatively high level

    Workshop on accounting for fishers and other stakeholders’ perceptions of the dynamics of fish stocks in ICES advice (WKAFPA)

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    The objective of the Workshop on accounting for fishers and other stakeholders’ perceptions of the dynamics of fish stocks in ICES advice (WKAFPA) was to identify where and how stake- holder information could be incorporated in the ICES fisheries advice process. It adopted an operational definition of the concept of perception, where perceptions result from observations, interpreted in light of experience, that can be supported by data, information and knowledge to generate evidence about them. Stakeholder information can be either structured (e.g. routinely collected information in a standardized format) or unstructured (e.g. experiential information) and either of those can inform decisions made during the production of ICES advice. Most notably, the group identified there was a need to engage with stakeholders earlier in the process, i.e. before benchmarks meetings take place and before preliminary assessment results are used as the basis to predict total allowable catches for upcoming advice (Figure 4.2). It was therefore recommended to include in the ICES process the organisation of pre-bench- mark/roadmap workshops where science and data needs of upcoming benchmarks can be iden- tified, followed by making arrangements how scientists and stakeholders can collaborate to ac- cess, prepare for use (where relevant) and document the structured and unstructured infor- mation well ahead of the benchmark meetings. It was also recommended to organise ‘sense-checking’ sessions with stakeholders when prelim- inary assessments are available but not yet used as the basis for advisory production. This would allow stakeholders and assessment scientists to verify available knowledge and data against stock perceptions and provide additional considerations relevant for the production of TAC ad- vice. Next to these two additional activities, it is recommended that communication on differ- ences in stakeholder perception or data derived perceptions are communicated within the ICES assessment reports as well as in the ICES advice in a transparent manner. Not only should dif- ferences or similarities be documented and communicated, in those cases where there are differ- ences in perception between ICES stock assessments and stakeholders, a working group, external to the assessment working groups, should evaluate these differences and describe whether these differences can be logically explained or require further investigation. This outcome of this pro- cess may potentially lead to new data collection or additional analyses suitable for input to benchmarks. Essential in this entire process is making sure the same language is spoken between scientists and stakeholders, that there are clear and transparent processes in place on how to deal with stakeholder information and communicate clearly how this information is used in the prepara- tion of ICES advice.info:eu-repo/semantics/publishedVersio

    Workshop on accounting for fishers and other stakeholders’ perceptions of the dynamics of fish stocks in ICES advice (WKAFPA)

    Get PDF
    The objective of the Workshop on accounting for fishers and other stakeholders’ perceptions of the dynamics of fish stocks in ICES advice (WKAFPA) was to identify where and how stakeholder information could be incorporated in the ICES fisheries advice process. It adopted an operational definition of the concept of perception, where perceptions result from observations, interpreted in light of experience, that can be supported by data, information and knowledge to generate evidence about them. Stakeholder information can be either structured (e.g. routinely collected information in a standardized format) or unstructured (e.g. experiential information) and either of those can inform decisions made during the production of ICES advice. Most notably, the group identified there was a need to engage with stakeholders earlier in the process, i.e. before benchmarks meetings take place and before preliminary assessment results are used as the basis to predict total allowable catches for upcoming advice (Figure 4.2). It was therefore recommended to include in the ICES process the organisation of pre-benchmark/roadmap workshops where science and data needs of upcoming benchmarks can be identified, followed by making arrangements how scientists and stakeholders can collaborate to access, prepare for use (where relevant) and document the structured and unstructured information well ahead of the benchmark meetings. It was also recommended to organise ‘sense-checking’ sessions with stakeholders when preliminary assessments are available but not yet used as the basis for advisory production. This would allow stakeholders and assessment scientists to verify available knowledge and data against stock perceptions and provide additional considerations relevant for the production of TAC advice. Next to these two additional activities, it is recommended that communication on differences in stakeholder perception or data derived perceptions are communicated within the ICES assessment reports as well as in the ICES advice in a transparent manner. Not only should differences or similarities be documented and communicated, in those cases where there are differences in perception between ICES stock assessments and stakeholders, a working group, external to the assessment working groups, should evaluate these differences and describe whether these differences can be logically explained or require further investigation. This outcome of this process may potentially lead to new data collection or additional analyses suitable for input to benchmarks. Essential in this entire process is making sure the same language is spoken between scientists and stakeholders, that there are clear and transparent processes in place on how to deal with stakeholder information and communicate clearly how this information is used in the preparation of ICES advice.Peer reviewe

    Rising rural body-mass index is the main driver of the global obesity epidemic in adults

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    Body-mass index (BMI) has increased steadily in most countries in parallel with a rise in the proportion of the population who live in cities(.)(1,2) This has led to a widely reported view that urbanization is one of the most important drivers of the global rise in obesity(3-6). Here we use 2,009 population-based studies, with measurements of height and weight in more than 112 million adults, to report national, regional and global trends in mean BMI segregated by place of residence (a rural or urban area) from 1985 to 2017. We show that, contrary to the dominant paradigm, more than 55% of the global rise in mean BMI from 1985 to 2017-and more than 80% in some low- and middle-income regions-was due to increases in BMI in rural areas. This large contribution stems from the fact that, with the exception of women in sub-Saharan Africa, BMI is increasing at the same rate or faster in rural areas than in cities in low- and middle-income regions. These trends have in turn resulted in a closing-and in some countries reversal-of the gap in BMI between urban and rural areas in low- and middle-income countries, especially for women. In high-income and industrialized countries, we noted a persistently higher rural BMI, especially for women. There is an urgent need for an integrated approach to rural nutrition that enhances financial and physical access to healthy foods, to avoid replacing the rural undernutrition disadvantage in poor countries with a more general malnutrition disadvantage that entails excessive consumption of low-quality calories.Peer reviewe
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