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BACKGROUND AND AIMS: High sodium intake is one of the main risk factors for noncommunicable diseases, and its consumption should be reduced. This study aimed to simulate changes in the daily salt intake of the Italian adult population based on consumption scenarios of prepacked cereal-based foods sold in Italy. METHODS AND RESULTS: Information on food packages was retrieved from 2893 cereal-based products. Potential changes in salt intake were simulated based on food consumption scenarios that consider the daily consumption of cereal-based products suggested in the Italian Dietary Guidelines and their current daily consumption by Italian adults. The highest salt content was retrieved in bread (median, 25th-75th percentile: 1.3, 1.1-1.4 g/100 g) and bread substitutes (1.8, 1.0-2.2 g/100 g). If the suggested daily amounts were consumed, bread would contribute to 44% of the 5 g salt/day target, whereas bread substitutes, breakfast cereals, biscuits and sweet snacks would marginally contribute (1-2%). Compared to bread with median salt content, a -44% and +10% salt intake would be observed if products within the first and the last quartile of salt content were chosen, respectively. However, considering the actual intake of Italian consumers, bread would cover 25% and bread substitutes 7% of the daily salt target. CONCLUSION: Food labels have a pivotal role and efforts are required to encourage consumers to use them to make healthy choices. Moreover, these results may contribute to setting sodium benchmarks in cereal-based products and encourage the food industry to reduce the salt content in the products.
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Grão Comestível , Cloreto de Sódio na Dieta , Adulto , Humanos , Cloreto de Sódio na Dieta/efeitos adversos , Sódio , Estado Nutricional , Política NutricionalRESUMO
The word-of-mouth (WOM) marketing process is one of the main means by which consumers obtain information. As a communication channel between consumers in economically developing countries, WOM may contribute to the development of the organic food market. The primary objective of this study is to segment organic saffron consumers in Mashhad, Iran, and determine how they engage in WOM marketing. Data were collected through questionnaires from 13 districts of Mashhad using a stratified sampling method. In this study, 400 organic saffron consumers were grouped using a self-organizing map (SOM) neural network based on consumer neobehavioristic theory, and then, using decision trees, consumer behavior rules were extracted for participating in the WOM for each group. According to the results, less than fifty percent of consumers in each of the four market segments are willing to participate in WOM advertising for organic saffron. A lack of awareness of the characteristics of organic saffron is also found to be the main reason for consumers' reluctance to recommend organic saffron to others. Mass-media advertising is an effective way to raise consumer awareness and influence opinion leaders, ultimately resulting in WOM recommendations.
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Publicidade , Comportamento do Consumidor , Alimentos Orgânicos , Humanos , Feminino , Masculino , Adulto , Irã (Geográfico) , Inquéritos e Questionários , Publicidade/métodos , Marketing/métodos , Crocus , Pessoa de Meia-Idade , Adulto Jovem , Meios de Comunicação de Massa , Preferências Alimentares/psicologiaRESUMO
BACKGROUND: Nutrition and health claims influence consumer purchasing. Claims include content claims, which refer to the amount of a nutrient contained in a product, and health claims, which refer to health benefits of foods or nutrients in a product. Products that display a health claim must meet the Nutrient Profiling Scoring Criterion (NPSC). The present study aimed to explore consumer perceptions of content claims used on food and beverage labelling and advertisements. METHODS: Semi-structured focus groups were conducted with Australian consumers. Analysis involved an inductive, reflexive approach to thematic analysis. RESULTS: Six focus groups involving 26 participants were conducted. Four main interconnected themes were generated: (1) complex factors influence food choice; (2) content claim scepticism; (3) the difference between content and health claims is unclear; and (4) the regulation of content claims is not common knowledge. Content claims were used, although generally viewed through a lens of scepticism and mistrust, and seen as a promotional tool for the food industry. Product complexity appeared to increase content claim use as a result of consumer uncertainty of the content of complex products, such as ultraprocessed foods. Most participants were aware that content and health claims were in some way regulated. Overall, they did not know further detail, including the relevant regulatory body. CONCLUSIONS: For content claims to support the consumer they need to be accurate and their use limited to healthier foods. This can be achieved by requiring products with content claims to meet NPSC thresholds, as required for products making health claims.
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Rotulagem de Alimentos , Alimentos Especializados , Humanos , Valor Nutritivo , Austrália , NutrientesRESUMO
EDUCATIONAL CHALLENGE: Each year, adverse events are reported in healthcare, of which many relate to healthcare workforce cognitive bias. The active involvement of workforce and consumers in the review and co-design of effective training for the healthcare workforce to recognise, monitor, and manage unconscious bias is required. PROPOSED SOLUTION: We used participatory action research to co-design an innovative, interprofessional simulation based on 'real world' clinical incidents and lived experiences to improve the delivery of safe, high quality, consumer-focused healthcare. Following ethics approval, content analysis of serious adverse patient safety events involving cognitive bias was conducted. These data informed audio-recorded interviews with the healthcare workforce and consumers to explore their experiences of cognitive bias. Following thematic analysis, key themes of communication, stigma, diagnostic overshadowing, and fragmented systems were uncovered. Guided by consumers, these themes were interwoven into a simulation scenario that included real places, stories, and verbatim quotes delivered through mixed media artefacts. This heightened the immersive and experiential learning that aimed to uncover unconscious bias and help learners recognise its impact on clinical decisions and practice. POTENTIAL BENEFITS AND NEXT STEPS: To our knowledge, this is the first interprofessional, co-designed simulation to specifically address cognitive bias in current and future healthcare workforce. Plans to translate this research into a practical framework on how to work with key stakeholders (including consumers) to identify 'real-world' health service risks and co-design targeted simulations to address these gaps are described, including lessons learned.
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Cognição , Humanos , Treinamento por Simulação , Comunicação , Segurança do Paciente , Pessoal de Saúde/psicologia , Pessoal de Saúde/educação , Viés , Aprendizagem Baseada em ProblemasRESUMO
Introduction: The use of teleconsultation systems has increased in recent years, which has improved patients' access to health care providers and enabled seamless interaction between them. The literature points out several factors that either facilitate or impede the use of teleconsultation. However, there is a lack of studies that provide empirical evidence of factors that influence consumers' motivation toward the use of teleconsultation systems. Aim and Objective: This study aimed to provide empirical evidence of the internal and external factors that influence consumers' motivation toward the use of teleconsultation systems. Methods: A cross-sectional survey was used to collect data from consumers who used a real-time teleconsultation system called the Sehha application in Saudi Arabia between March 13 and June 14, 2021. SPSS 27.0.1 was used for descriptive analysis. Results: Four hundred eighty-five participants completed the survey, 471 of whom were included in the analysis. The findings confirmed that internal and external factors exert an influence on consumers' motivation toward the use of teleconsultation systems. The findings indicated that the presence of factors such as saving time, saving cost, accessibility to health care, ease-of-use, reliable internet access, availability of devices, and appropriate places during the online connection would increase consumers' motivation toward teleconsultation systems use. Also, the findings indicated that users' familiarity with systems similar to teleconsultation systems, users' perception of teleconsultation convenience, the influence of others on users' decision to use teleconsultation, and user's skills and confidence in using teleconsultation easily, and their trust in the teleconsultation system would also increase their motivation to use it. Furthermore, the findings showed that demographic factors, including age, gender, level of education, and employment status, did not influence users' motivation toward the use of teleconsultation Conclusions: This study provided empirical evidence of a variety of internal and external factors that exert an influence on consumers' motivation toward the use of teleconsultation systems.
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Consulta Remota , Humanos , Motivação , Estudos Transversais , Pessoal de Saúde , Processos MentaisRESUMO
Sustainability is crucial for transforming the food system, addressing environmental and nutrition issues and depends on consumer perceptions and values. This cross-sectional study investigates the relationship between sustainability attitudes, knowledge, and eating behaviours. Nearly half reported high level of knowledge regarding food sustainability while 24% expressed high attitude towards food sustainability. Women reported higher levels of knowledge and attitude towards food sustainability. Logistic regression analyses, adjusted for age, sex, and education, revealed that using public transport, biking, or walking was significantly associated with higher odds of having a more positive overall attitude towards food sustainability (OR = 1.77). The overall knowledge score was a strong predictor of a positive overall attitude score (OR = 2.11). Examining individual knowledge-related items, almost all were associated with higher levels of knowledge, except those regarding food and environment interaction. These findings underline a complex scenario where consumers' awareness and knowledge highly influence the applicability of sustainable food choices.
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Comportamento do Consumidor , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Estudos Transversais , Feminino , Adulto , Masculino , Pessoa de Meia-Idade , Itália , Adulto Jovem , Inquéritos e Questionários , Idoso , Comportamento Alimentar , Adolescente , Preferências Alimentares , Abastecimento de AlimentosRESUMO
Introduction: The outbreak of the novel coronavirus disease-19 posed significant challenges globally, impacting various sectors and health care systems profoundly. In response, telemedicine has emerged as a vital solution to address health care demands and resource shortages. However, there is a lack of comprehensive research on telemedicine usage among health care consumers in urban and rural areas of Taiwan. Methods: This study aimed to investigate the usage, attitudes, and intentions of telemedicine utilization among health care consumers in Taiwan, integrating the Technology Acceptance Model and Theory of Planned Behavior. A cross-sectional study was conducted from April 2023 to May 2024, involving 1,053 participants who utilized telemedicine services. Structured questionnaires were used for data collection, and statistical analyses were performed using SPSS 21.0 software. Results: The results revealed significant disparities in telemedicine utilization between urban and rural areas, with urban residents exhibiting higher levels of perceived ease of use, perceived usefulness, attitude toward use, trust, and intention to use telemedicine. Regression analysis indicated a significant association between urban residence and male gender with telemedicine utilization, contrary to previous research findings. These disparities may stem from differences in health care accessibility and cultural norms prevalent in urban and rural areas. Conclusions: Further investigation into gender differences and interventions to promote telemedicine usage among females, particularly in urban areas, are recommended. This study provides valuable insights for future research and health care policy formulation.
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Worldwide, the adoption of electric automobiles is gaining momentum, owing to a steady rise in customers' sustainability consciousness. So far, electric vehicle-related studies have investigated consumer motives, attitudes, and intentions toward adoption. However, empirical research on enablers and inhibitors of electric vehicle choice behaviour has not been fully explored, particularly in an emerging market context, (e.g., India). The present study employed a judicious mix of three notable theoretical lenses of dual-factor theory, innovation resistance theory, and the stimulus-organism-response model to empirically scrutinize electric vehicle adoption enablers and inhibitors by analysing data collected from 391 young Indian sustainability-oriented electric vehicle users. The sample was gathered via the purposive sampling method, and the data was analysed employing structural equation and PROCESS macro modelling. The research posits that consumer sustainability consciousness (CSC) is a stimulus with a positive influence on enablers (e.g., personal motives, social motives, and incentive policy) as well as inhibitors (e.g., usage, value, and risk barriers). Additionally, product involvement and perceived marketplace influence significantly moderate the relationship between choice behaviour and facilitators and inhibitors. The research offers a few useful strategic decision-making insights for electric vehicle manufacturers, green marketers, and policymakers from emerging markets.
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Comportamento de Escolha , Comportamento do Consumidor , Intenção , Motivação , AtitudeRESUMO
Low consumer acceptance of edible insects and insect-based products is one of the main barriers to the successful implementation of entomophagy in Western countries. This rejection is mainly caused by consumers' negative emotional responses, psychological/personality traits, and attitudes toward food choices. However, as the role of intrinsic product characteristics on such food choices has not been adequately studied, a systematic review was conducted following the PRISMA method, to analyze studies that have assessed hedonic evaluations, sensory profiling, or emotional responses to edible insects or insect-based products. The majority of studies performed with whole insects and insect flour highlight that insect-based products are more negatively evaluated than control products. Although the sensory properties of insects are affected by species and processing conditions, they are generally negative across sensory dimensions. In particular, insects and insect-based products are generally associated with odor and flavor/taste attributes that are related to old/spoiled food. These negative attributes can be linked to the fat fraction of edible insects, with insect oils being very negatively evaluated by consumers. On the other hand, defatted fractions and deodorized oils are not associated with these negative attributes, further supporting the hypothesis that the fat fraction is responsible for the negative odor and flavor/taste attributes. However, there is still a lack of studies assessing the sensory profile of edible insects and insect-based products, as well as consumers' emotional responses to their consumption. Future studies should focus on the effects of different processing conditions, products incorporating insect fractions (namely protein concentrates/isolates and defatted fractions), and evaluation by target consumer groups.
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Insetos Comestíveis , Animais , Emoções , Farinha , Insetos , Óleos , HumanosRESUMO
This research unpacks the challenges and motivations of telehealth usage among older consumers-an understudied population in the extant telehealth literature. Through surveying a sample of older consumers who regularly migrate to winter in the southern areas of the United States, our qualitative analysis uncovers motivations (i.e., convenience, ease of use, efficiency, and a forced option) and challenges (i.e., telehealth limitations, privacy concerns, and lack of trust, access, and skills) of older consumers' telehealth usage. Furthermore, logistic regression identifies attitude toward telehealth, gender, and health status as significant predictors of telehealth usage behavior. Contributions to theory and practice are also discussed.
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Telemedicina , Humanos , Estados Unidos , Atitude , Motivação , PandemiasRESUMO
INTRODUCTION: Idiopathic inflammatory myopathies (known as 'myositis') are a group of rare sporadic inflammatory muscle disorders that significantly impact function and quality of life. There are no standardised approaches in the use of assistive technologies in myositis. This study was initiated to investigate current use and perceived value of assistive technology (AT) by people with myositis. METHODS: A cross-sectional online questionnaire (Qualtrics) was designed to capture information regarding AT use and perceived value and demographic information from people with myositis across Australia. The questionnaire was distributed via the Myositis Association of Australia and specialist myositis clinics. Participants were asked to identify which AT items they owned and how frequently the item was used and to rate the 'usefulness' of those items. Information was also collected on participants' engagement with health professionals regarding assistive technologies. CONSUMER AND COMMUNITY INVOLVEMENT: Consumer involvement via the Myositis Research Consumer Panel identified a knowledge gap regarding AT. The questionnaire was designed with consumer input and review. RESULTS: One hundred two people (102) with myositis completed the questionnaire. One hundred (100) participants owned at least one AT device, with a median of 12.5 items and a maximum of 65 items. The most used devices were associated with toileting, personal care and mobility. Participants rated AT devices relating to environmental support, sleeping, seating and body support as most useful. There was a positive correlation between disease duration and number of devices used (r2 = 0.248, p = 0.012). Majority of participants (75.5%) were interested in talking to health professionals about AT; however, only 50% had done so. CONCLUSION: AT device usage is high among people with myositis, with most items deemed to be useful. Greater occupational therapy input into recommendations and potential funding options may improve knowledge and access to AT.
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In recent years, concerns about the financial burdens of health care and growing recognition of the relevance of cost to decision making and patient experience have increasingly focused attention on financial 'transparency' and disclosure of costs to patients. In some jurisdictions, there have been calls not only for timely disclosure of costs information, but also for 'informed financial consent'. However, simply putting the 'financial' into 'informed consent' and invoking an informed consent standard for cost information encounters several ethical, legal, and practical difficulties. This article will examine the viability and desirability of 'informed financial consent', and whether it is possible to derive ideas from traditional informed consent that may improve decision making and the patient experience. We argue that, while there are important legal, ethical, and practical challenges to consider, some of the principles of informed consent to treatment can usefully guide financial communication. We also argue that, while medical practitioners (and their delegates) have an important role to play in bridging the gap between disclosure and enabling informed (financial) decision making, this must be part of a multi-faceted approach to financial communication that acknowledges the influence of non-clinical providers and other structural forces on discharging such obligations.
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INTRODUCTION: Co-design is a consumer-driven approach that facilitates consumer participation in creating meaningful solutions to complex problems. Poor uptake of core management strategies for osteoarthritis suggests there is a missing link in translation between research and practice. We partnered with osteoarthritis consumers as 'co-researchers' to identify translational research solutions to improve uptake of core management strategies that are grounded in lived experiences. OBJECTIVE: To transparently describe a theory-driven, generative co-design approach using an integrated conceptual framework to collaborate with consumers at the equal partnership level. DESIGN: We used co-design workshops with a non-hierarchical participatory framework. Three workshops with six co-researchers [2 female, mean age 68.7 (9.8) years, 3-30 years symptom duration] were conducted using activities to encourage creative thinking, promote deep reflection on personal/societal beliefs and minimise sensitivities around sharing personal beliefs (e.g., establishing a safe space, prompting questions, perspective-taking, counter-stereotypical exemplars). RESULTS: All six co-researchers actively participated in the workshops. Achievement of an equal collaborative partnership was evidenced by co-researchers challenging a project proposed by the research team and making alternative recommendations that have been implemented in prospective decision-making - representing a complete change in research focus driven by consumer input. A key suggested solution was to develop a scalable knowledge translation intervention that targets misconceptions about osteoarthritis and its management at the societal-level. CONCLUSIONS: Through an innovative co-design approach in partnership with co-researchers, we identified meaningful areas on which to focus translational research for osteoarthritis. Discordance between existing research priorities and novel solutions proposed by co-researchers highlights the value of co-design.
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Criatividade , Pesquisa Translacional Biomédica , Humanos , Feminino , Idoso , Ciência Translacional Biomédica , Participação da ComunidadeRESUMO
Direct-to-consumer genetic tests (DTC-GT) offer a variety of genetic health risk information. Understanding evidence of impacts is required for effective policy to protect consumers and healthcare services. We undertook a systematic review according to PRISMA guidelines, searching five literature databases for articles assessing analytic or clinical validity, or reporting consumer or healthcare professional experience with health risk information derived from DTC-GT, published between November 2014 and July 2020. We performed a thematic synthesis to identify descriptive and analytical themes. Forty-three papers met inclusion criteria. Many consumers submit raw DTC-GT data for third-party interpretation (TPI). DTC-GT sometimes report 'false positive' or incorrectly interpreted rare variants, or that such information can result from TPI. Consumers have high expectations of DTC-GT and TPI, and are broadly satisfied, although many do not act on results. A minority of consumers experience adverse psychological impacts. Healthcare consultations can be complex, and professionals have reservations about the validity and utility of DTC-GT-derived information. The contrast between consumer and health professional perceptions can result in mutual dissatisfaction with consultations. Health risk information from DTC-GT and TPI is broadly valued by consumers but presents complex challenges for healthcare services and some consumers.
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Triagem e Testes Direto ao Consumidor , Humanos , Testes Genéticos/métodos , Encaminhamento e Consulta , Pessoal de SaúdeRESUMO
OBJECTIVE: Understanding the unmet needs of healthcare consumers with attention-deficit/hyperactivity disorder (ADHD) (individuals with ADHD and their caregivers) provides critical insight into gaps in services, education and research that require focus and funding to improve outcomes. This review examines the unmet needs of ADHD consumers from a consumer perspective. METHODS: A standardised search protocol identified peer-reviewed studies published between December 2011 and December 2021 focusing on consumer-identified needs relating to ADHD clinical care or research priorities. RESULTS: 1,624 articles were screened with 23 studies that reviewed examining the needs of ADHD consumers from Europe, the U.K., Hong Kong, Iran, Australia, the U.S.A. and Canada. Consumer-identified needs related to: treatment that goes beyond medication (12 studies); improved ADHD-related education/training (17 studies); improved access to clinical services, carer support and financial assistance (14 studies); school accommodations/support (6 studies); and ongoing treatment efficacy research (1 study). CONCLUSION: ADHD consumers have substantial unmet needs in clinical, psychosocial and research contexts. Recommendations to address these needs include: improving access to and quality of multimodal care provision; incorporating recovery principles into care provision; fostering ADHD health literacy; and increasing consumer participation in research, service development and ADHD-related training/education.
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Transtorno do Deficit de Atenção com Hiperatividade , Humanos , Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Cuidadores , Europa (Continente) , Instituições Acadêmicas , AustráliaRESUMO
Dramatically increasing trends in consumption of ultra-processed foods have been reported across the globe. Public concern about the health consequences of ultra-processed foods is high. This manuscript provides a comprehensive review of trends in global consumption of ultra-processed foods, dietary nutrient profile of ultra-processed foods, demographic, socioeconomic, psychological, and behavioral characteristics of ultra-processed food consumers, current evidence from longitudinal studies at the population level on the association between ultra-processed foods consumption and major health outcomes (including all-cause and cause-specific mortality, cardiovascular disease, overweight and obesity, body composition and fat deposition, diabetes, cancer, and gastrointestinal and other diseases), potential mechanisms linking ultra-processed foods with these outcomes (nutrient displacement, factors that influence adiposity, and processing), and challenges and future research directions. The global trends in consumption of ultra-processed foods, the generally unfavorable nutrient profile of ultra-processed foods, the characteristics of ultra-processed food consumers, the accumulating longitudinal studies associating ultra-processed foods with major health outcomes, and the uncertainties and complexities in putative mechanisms all highlight the need for future high-quality epidemiologic and mechanistic investigations on this topic. It is critical to interpret findings in the light of the totality of evidence.
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Fast Foods , Alimento Processado , Humanos , Fast Foods/efeitos adversos , Manipulação de Alimentos , Dieta , Obesidade/epidemiologia , Obesidade/etiologia , Ingestão de EnergiaRESUMO
The regulation of health claims for foods by the Nutrition and Health Claims Regulation is intended, primarily, to protect consumers from unscrupulous claims by ensuring claims are accurate and substantiated with high quality scientific evidence. In this position paper, the Academy of Nutrition Sciences uniquely recognises the strengths of the transparent, rigorous scientific assessment by independent scientists of the evidence underpinning claims in Europe, an approach now independently adopted in UK. Further strengths are the separation of risk assessment from risk management, and the extensive guidance for those submitting claims. Nevertheless, four main challenges in assessing the scientific evidence and context remain: (i) defining a healthy population, (ii) undertaking efficacy trials for foods, (iii) developing clearly defined biomarkers for some trial outcomes and (iv) ensuring the composition of a food bearing a health claim is consistent with generally accepted nutrition principles. Although the Regulation aims to protect the consumer from harm, we identify some challenges from consumer research: (i) making the wording of some health claims more easily understood and (ii) understanding the implications of the misperceptions around products bearing nutrition or health claims. Recommendations are made to overcome these challenges. Further, the Academy recommends that a dialogue is developed with the relevant national bodies about Article 12(c) in the Regulation. This should further clarify the GB Guidance to avoid the current non-level playing field between health professionals and untrained 'influencers' who are not covered by this Article about the communication of authorised claims within commercial communications.
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Rotulagem de Alimentos , Ciências da Nutrição , Alimentos , Estado Nutricional , Medição de RiscoRESUMO
Aquatic micropollutants can be transported to terrestrial systems and their consumers by emergent aquatic insects. However, micropollutants, such as metals, may also affect the flux of physiologically important polyunsaturated fatty acids (PUFAs). As certain PUFAs have been linked to physiological fitness and breeding success of terrestrial consumers, reduced fluxes from aquatic systems could affect terrestrial populations and food webs. We chronically exposed larvae of the aquatic insect Chironomus riparius to a range of environmentally relevant sediment contents of cadmium (Cd) or copper (Cu) in a 28-day microcosm study. Since elevated water temperatures can enhance metals' toxic effects, we used two temperature regimes, control and periodically elevated temperatures (heat waves) reflecting an aspect of climate change. Cd and Cu significantly reduced adult emergence by up to 95% and 45%, respectively, while elevated temperatures had negligible effects. Both metal contents were strongly reduced (â¼90%) during metamorphosis. Furthermore, the chironomid FA profile was significantly altered during metamorphosis with the factors sex and metal exposure being relevant predictors. Consequently, fluxes of physiologically important PUFAs by emergent adults were reduced by up to â¼80%. Our results suggest that considering fluxes of physiologically important compounds, such as PUFAs, by emergent aquatic insects is important to understand the implications of aquatic micropollutants on aquatic-terrestrial meta-ecosystems.
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Chironomidae , Cadeia Alimentar , Animais , Ecossistema , Ácidos Graxos , Cádmio , Metais/toxicidade , Insetos/fisiologiaRESUMO
PURPOSE: This study asked consumers (patients, carers) and healthcare professionals (HCPs) to identify the most important symptoms for adults with cancer and potential treatment interventions. METHODS: A modified Delphi study was conducted involving two rounds of electronic surveys based on prevalent cancer symptoms identified from the literature. Round 1 gathered information on participant demographics, opinions and/or experience on cancer symptom frequency and impact, and suggestions for interventions and/or service delivery models for further research to improve management of cancer symptoms. In Round 2, respondents ranked the importance of the top ten interventions identified in Round 1. In Round 3, separate expert panels of consumers and healthcare professionals (HCPs) attempted to reach consensus on the symptoms and interventions previously identified. RESULTS: Consensus was reached for six symptoms across both groups: fatigue, constipation, diarrhoea, incontinence, and difficulty with urination. Notably, fatigue was the only symptom to reach consensus across both groups in Round 1. Similarly, consensus was reached for six interventions across both groups. These were the following: medicinal cannabis, physical activity, psychological therapies, non-opioid interventions for pain, opioids for breathlessness and cough, and other pharmacological interventions. CONCLUSIONS: Consumers and HCPs prioritise differently; however, the symptoms and interventions that reached consensus provide a basis for future research. Fatigue should be considered a high priority given its prevalence and its influence on other symptoms. The lack of consumer consensus indicates the uniqueness of their experience and the need for a patient-centred approach. Understanding individual consumer experience is important when planning research into better symptom management.
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Neoplasias , Humanos , Adulto , Técnica Delphi , Nova Zelândia , Austrália , Neoplasias/complicações , Neoplasias/terapia , Projetos de Pesquisa , Fadiga/etiologia , Fadiga/terapiaRESUMO
BACKGROUND: The importance and value of involvement of people with lived experience of suicide has been recognized in suicide research and prevention. Nonetheless, clear guidance on research collaboration and co-production is lacking. This study aimed to address this gap by developing a set of guidelines on active involvement of people with lived experience of suicide in suicide studies., i.e., conducting research with or by people with lived experience, rather than to, about or for them. METHODS: The Delphi method was used to determine statements on best practice for the active involvement of people with lived experience of suicide in suicide research. Statements were compiled through a systematic search of the scientific and grey literature, and reviewing qualitative data from a recent related study conducted by the authors. Two expert panels: people with lived experience of suicide (n = 44) and suicide researchers (n = 29) rated statements over three rounds of an online survey. Statements endorsed by at least 80% of panellists of each panel were included in the guidelines. RESULTS: Panellists endorsed 96 out of 126 statements in 17 sections covering the full research cycle from deciding on the research question and securing funding, to conducting research and disseminating and implementing outcomes. Overall, there was a substantial level of agreement between the two panels regarding support from research institutions, collaboration and co-production, communication and shared decision making, conducting research, self-care, acknowledgment, and dissemination and implementation. However, panels also disagreed on specific statements regarding representativeness and diversity, managing expectations, time and budgeting, training, and self-disclosure. CONCLUSIONS: This study identified consensus recommendations on active involvement of people with lived experience of suicide in suicide research, including co-production. Support from research institutions and funders, and training on co-production for researchers and people with lived experience, are needed for successful implementation and uptake of the guidelines.