Although the value of patient and public involvement and engagement (PPIE) activities in the development of new interventions and tools is well known, little guidance exists on how to perform these ...activities in a meaningful way. This is particularly true within large research consortia that target multiple objectives, include multiple patient groups, and work across many countries. Without clear guidance, there is a risk that PPIE may not capture patient opinions and needs correctly, thereby reducing the usefulness and effectiveness of new tools. Mobilise-D is an example of a large research consortium that aims to develop new digital outcome measures for real-world walking in 4 patient cohorts. Mobility is an important indicator of physical health. As such, there is potential clinical value in being able to accurately measure a person's mobility in their daily life environment to help researchers and clinicians better track changes and patterns in a person's daily life and activities. To achieve this, there is a need to create new ways of measuring walking. Recent advancements in digital technology help researchers meet this need. However, before any new measure can be used, researchers, health care professionals, and regulators need to know that the digital method is accurate and both accepted by and produces meaningful outcomes for patients and clinicians. Therefore, this paper outlines how PPIE structures were developed in the Mobilise-D consortium, providing details about the steps taken to implement PPIE, the experiences PPIE contributors had within this process, the lessons learned from the experiences, and recommendations for others who may want to do similar work in the future. The work outlined in this paper provided the Mobilise-D consortium with a foundation from which future PPIE tasks can be created and managed with clearly defined collaboration between researchers and patient representatives across Europe. This paper provides guidance on the work required to set up PPIE structures within a large consortium to promote and support the creation of meaningful and efficient PPIE related to the development of digital mobility outcomes.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
Introdução: A prevalência de cardiopatias congénitas em Portugal é de 8,3/1000 nascimentos; cardiopatias congénitas críticas não detectadas podem resultar em graves consequências para o ...feto/recém-nascido. O objectivo deste trabalho é descrever os casos de cardiopatia congénita reportados em Portugal em 2015 quanto ao diagnóstico pré-natal, patologia cardíaca e à presença de outras malformações congénitas ou anomalias cromossómicas. Estas características são comparadas nos subgrupos dos nados-vivos e de interrupção médica da gravidez. Por último, caracterizam-se os óbitos.Material e Métodos: Os dados de cardiopatias congénitas reportadas ao Registo Nacional de Anomalias Congénitas em 2015 foram analisados, e calculadas as taxas de prevalência por 1000 nascimentos, comparadas utilizando teste de independência do quiquadrado.Resultados: A prevalência de cardiopatias congénitas neste estudo foi de 5/1000, (339 nados-vivos, 20% com cardiopatias congénitas críticas). As cardiopatias mais frequentes foram as seguintes: comunicação interventricular (38%), comunicação interauricular (15%), coartação da aorta (7%), tetralogia de Fallot (7%) e estenose pulmonar (5%). Um terço dos nados-vivos teve diagnostico pré-natal de cardiopatia. Dos nados-vivos com cardiopatias congénitas críticas, 54% teve diagnostico pré-natal e 14% foi diagnosticado ao nascer. Foram identificados 84 registos de interrupção médica da gravidez; 49% apresentava cardiopatias congénitas críticas, 75% outras malformações associadas, e 40% cromossomopatias. Foram registados 15 óbitos (3,4% de mortalidade) associados a prematuridade e/ou baixo-peso ao nascer, cardiopatias congénitas críticas, outras malformações e anomalias cromossómicas.Discussão: A prevalência de cardiopatias congénitas neste estudo (5/1000 nascimentos) foi inferior ao descrito noutros estudos internacionais, não obstante uma distribuição por tipo de anomalia semelhante ao previamente reportado. Observaram-se assimetrias regionais significativas que necessitam de mais investigação.Conclusão: Este estudo é relevante para melhor conhecimento da realidade nacional e organização dos Cuidados de Saúde. É importante uma maior adesão ao Registo Nacional de Anomalias Congénitas.
elemental deficiency may result in the malfunctioning of human organisms. Sprouts, with their attractive looks and well-established popularity, may be considered as alternative sources of elements in ...the diet. Moreover, the uptake of micro- and macronutrients from sprouts is better when compared to other vegetable sources. The aim of the study was to determine and compare the level of the selected essential minerals and trace elements in 25 sprouts from different botanical families, to preselect the richest species of high importance for human diets.
the Cu, Zn, Mn, Fe, Mg, Ca determinations were performed using atomic absorption spectrometry with flame atomization and iodine by the colorimetric method.
beetroot sprouts had the highest levels of Zn, Fe, and Mg, while onion sprouts were the richest in Mn and Ca, among all of the tested sprouts. Sprouts of the
family were generally richer in Ca, Mg, and Zn than sprouts from the
family. Results allow preselection of the most perspective sprouts as possible dietary sources of essential minerals and trace elements. For rucola, leeks, onions, and beetroot sprouts, the data on minerals and trace element compositions were performed for the first time.
A beverage benchtop prototype related to oxidative stress protection was developed based on sweet potato peels phenolics. Formula components were sweet potato peel (Ipomoeas batatas L.) aqueous ...extract (SPPE), sweet potato leaves water extract (SPLE) and honey solution (HonS). According to linear squares regression (LSR) models, SPLE presented higher additive effect on total phenolic content (TPC), FRAP and DPPH than the other components. All antagonist interactions were not significant. The optimum formula obtained by artificial neural networks (ANN) analysis was 50.0% of SPPE, 21.5% of SPLE and 28.5% of HonS. Predicted responses of TPC, FRAP, DPPH and soluble solids were 309 mg GAE/L, 476 mg TE/L, 1098 mg TE/L and 12.3 °Brix, respectively. Optimization with LSR models was similar to ANN. Beverage prototype results positioned next to commercial vegetable and fruit beverages, thus it has an interesting potential to the market of health and wellness.
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BFBNIB, DOBA, FSPLJ, GIS, IJS, IZUM, KILJ, KISLJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
There are currently 3.5 million people in Europe who require medical oxygen, and as life expectancies increase, this figure is likely to grow. At the same time, air travel is becoming more accessible ...to a wider range of people, as costs of flights fall, and airlines and airports make improvements to the accessibility of their services. People who need medical oxygen to fly experience a wide range of difficulties when planning to travel by plane, and sometimes during or after the flight. A European Commission Regulation (EC No 1107/2006) sets the standard for airlines when it comes to making air travel accessible, but healthcare professionals and oxygen providers can both help patients to navigate the various requirements for using medical oxygen when travelling. In this review, we discuss the journey of the patient planning to travel by air, from initial consultation and fit-to-fly test, through to planning their air travel and oxygen supply, travelling, and arriving at their destination. We also highlight some common problems at each stage and suggest points for healthcare professionals to discuss with patients.
Patients who require medical oxygen for air travel should begin planning their trip as far in advance as possible.It is very advantageous for healthcare professionals to be able to advise patients on travelling with oxygen and what they need to do.Requirements and policies can vary greatly between airlines, causing problems for patients who are trying to book their flights.Patients or their carers need to be confident operating their oxygen equipment, as the stress of travel and lack of medical assistance on an airplane can put them at risk.Careful arrangements need to be made by the patient to make sure that they have the correct oxygen therapy at their destination, and can access support if they need it.
To understand the process and potential challenges for a patient who requires oxygen to travel by plane.To be confident in discussing air travel with patients who are affected by lung disease.
Type 2 diabetes (T2D) is a chronic disease with a growing prevalence worldwide. In addition to the conventional therapy, many T2D patients use phytotherapeutic preparations. In the present study, ...chemical composition, antioxidant, and α-glucosidase inhibiting activity of traditional antidiabetics from Croatian ethnomedicine (Achillea millefolium, Artemisia absinthium, Centaurium erythraea, Morusalba, Phaseolus vulgaris, Sambucus nigra, and Salvia officinalis) were assessed. The efficacy of water and 80% ethanol as extraction solvents for bioactive constituents was compared. HPLC analysis revealed that the prepared extracts were rich in phenols, especially rutin, ferulic, and chlorogenic acid. Antiradical (against DPPH and ABTS radicals), reducing (towards Mo6+ and Fe3+ ions), and enzyme inhibiting properties were in linear correlation with the content of phenolic constituents. Ethanolic extracts, richer in phenolic substances, showed dominant efficacy in those assays. Aqueous extracts, on the other hand, were better Fe2+ ion chelators and more active in the β-carotene linoleic acid assay. Extracts from S. officinalis and A. millefolium were particularly active antioxidants and α-glucosidase inhibitors. A. absinthium, another potent α-glucosidase inhibitor, contained chromium, a mineral that promotes insulin action. The investigated plants contained significant amounts of minerals useful in management of T2D, with negligible amounts of heavy metals deeming them safe for human use.
Ethnic origin, genetics, gender and environmental factors have been shown to influence some immunologic indices, so that development of reference values for populations of different backgrounds may ...be necessary. We have determined the distribution of lymphocyte subsets in healthy Brazilian individuals from birth to adulthood. Lymphocyte subsets were determined using four-colour cytometry in a cross-sectional study of 463 human immunodeficiency virus-unexposed children and adults from birth through 49 years of age. Lymphocyte subsets varied according to age, as previously observed in other studies. However, total CD4+ T cell numbers were lower than what was described in the Pediatric AIDS Clinical Trials Group P1009 (PACTG P1009), which assessed an American population of predominantly African and Hispanic backgrounds until the 12-18 year age range, when values were comparable. Naïve percentages and absolute values of CD8+ T cells, as assessed by CD45RA expression, were also lower than the PACTG P1009 data for all analysed age ranges. CD38 expression on both CD4+ and CD8+ T cells was lower than the PACTG P1009 values, with a widening gap between the two studies at older age ranges. Different patterns of cell differentiation seem to occur in different settings and may have characteristic expression within each population.
Food provides humans with more than just energy and nutrients, addressing both vital needs and pleasure. Food habits are determined by a wide range of factors, from sensorial stimuli to beliefs and, ...once commanded by local and seasonal availability, are nowadays driven by marketing campaigns promoting unhealthy and non-sustainable foodstuffs. Top-down and bottom-up changes are transforming food systems, driven by policies on SDGs and by consumer’s concerns about environmental and health impacts. Food quality, in terms of taste, safety, and nutritional value, is determined by its composition, described in food composition databases (FDBs). FDBs are then useful resources to agronomists, food and mechanical engineers, nutritionists, marketers, and others in their efforts to address at maximum human nutrient needs. In this work, we analyse some relevant food composition databases (viz., purpose, type of data, ease of access, regularity of updates), inspecting information on the health and environmental nexus, such as food origin, production mode as well as nutritional quality. The usefulness and limitations of food databases are discussed regarding what concerns sustainable diets, the food ‘matrix effect’, missing compounds, safe processing, and in guiding innovation in foods, as well as in shaping consumers’ perceptions and food choices.
Melanoma Guidelines of the Brazilian Dermatology Society recommend histologic review by pathologists trained in melanocytic lesions whenever possible. Out of 145 melanoma cases identified at a ...private clinic in São Paulo/Brazil, 31 that had been submited to histologic review were studied to evaluate whether revision had led to change in therapeutic approach. Differences in original/reviewed reports were found in 58.1% (n=18) of the reports, leading to changes in therapeutic approach in 41.9% (n=13). Change in diagnosis was observed in 6 out of 31 (19,3%) cases. These findings suggest that second opinion by pathologists trained in melanocytic lesions is likely to show significant differences from the original report.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Treatment burden is defined as “the workload of healthcare and its effect on patient functioning and well-being” 1, 2. It has also been defined as “the self-care practices that patients with chronic ...illness must perform to respond to the requirements of their healthcare providers, as well as the impact that these practices have on patient functioning and well-being” 3. In this issue of
Breathe
, there are several articles addressing treatment burden from different perspectives. This Viewpoint article focusses on the discussions between the patient and their healthcare professional (HCP). What are the important topics to cover in discussions about treatment burden? What are the barriers to these discussions? What facilitates a productive conversation about treatment burden? The authors of this article include three patients (with asthma, COPD and idiopathic pulmonary fibrosis (IPF), four HCPs representing different specialties (primary care, secondary and tertiary care, nursing and pharmacy) and a representative of the European Lung Foundation (ELF). This article is based on a video discussion between the authors; it was then refined
via
e-mail by all the authors.
Healthcare professionals should help patients to reach informed decisions about treatments in order to maximise benefits while minimising treatment burden
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