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Epithelial-mesenchymal transition (EMT) and its reverse mechanism, mesenchymal-epithelial transition (MET), are evolutionarily conserved mechanisms initially identified in studies of early metazoan development. EMT may even have been established in choanoflagellates, the closest unicellular relative of Metazoa. These crucial morphological transitions operate during body plan formation and subsequently in organogenesis. These findings have prompted an increasing number of investigators in biomedicine to assess the importance of such mechanisms that drive epithelial cell plasticity in multiple diseases associated with congenital disabilities and fibrosis, and, most importantly, in the progression of carcinoma. EMT and MET also play crucial roles in regenerative medicine, notably by contributing epigenetic changes in somatic cells to initiate reprogramming into stem cells and their subsequent differentiation into distinct lineages.
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Células Epiteliais , Transição Epitelial-Mesenquimal , Animais , Humanos , Diferenciação Celular , Fibrose , OrganogêneseRESUMO
In the past three decades, there has been a rise in young academy movements in the Global North and South. Such movements, in at least Germany and the Netherlands, have been shown to be quite effective in connecting scientific work with society. Likewise, these movements share a common goal of developing interdisciplinary collaboration among young scientists, which contributes to the growth of a nation's-but also global-scientific endeavors. This paper focuses on the young academy movement in the fourth-largest country hosting the biggest Muslim population in the world, which is also the third-most populous democracy: Indonesia. We observe that there has been rising awareness among the young generation of scientists in Indonesia of the need to advocate for the use of sciences in responding to upcoming and current multidimensional crises. Science advocacy can be seen in their peer-based identification of Indonesia's future challenges, encompassing the fundamental areas for scientific inquiry, discovery, and intervention. We focus on the Indonesian Young Academy of Sciences (ALMI) and its network of young scientists. We describe ALMI's science communication practice, specifically SAINS45 and Science for Indonesia's Biodiversity, and how they have been useful for policymakers, media, and school engagements. The article closes with a reflection on future directions for the young academy movement in Indonesia and beyond.
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Islamismo , Indonésia , Alemanha , Países BaixosRESUMO
Science is humanity's best insurance against threats from nature, but it is a fragile enterprise that must be nourished and protected. The preponderance of scientific evidence indicates a natural origin for SARS-CoV-2. Yet, the theory that SARS-CoV-2 was engineered in and escaped from a lab dominates media attention, even in the absence of strong evidence. We discuss how the resulting anti-science movement puts the research community, scientific research, and pandemic preparedness at risk.
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Lung health, the development of lung disease, and how well a person with lung disease is able to live all depend on a wide range of societal factors. These systemic factors that adversely affect people and cause injustice can be thought of as "structural violence." To make the causal processes relating to chronic obstructive pulmonary disease (COPD) more apparent, and the responsibility to interrupt or alleviate them clearer, we have developed a taxonomy to describe this. It contains five domains: 1) avoidable lung harms (processes impacting lung development, processes that disadvantage lung health in particular groups across the life course), 2) diagnostic delay (healthcare factors; norms and attitudes that mean COPD is not diagnosed in a timely way, denying people with COPD effective treatment), 3) inadequate COPD care (ways in which the provision of care for people with COPD falls short of what is needed to ensure they are able to enjoy the best possible health, considered as healthcare resource allocation and norms and attitudes influencing clinical practice), 4) low status of COPD (ways COPD as a condition and people with COPD are held in less regard and considered less of a priority than other comparable health problems), and 5) lack of support (factors that make living with COPD more difficult than it should be, i.e., socioenvironmental factors and factors that promote social isolation). This model has relevance for policymakers, healthcare professionals, and the public as an educational resource to change clinical practices and priorities and stimulate advocacy and activism with the goal of the elimination of COPD.
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Diagnóstico Tardio , Doença Pulmonar Obstrutiva Crônica , Humanos , Doença Pulmonar Obstrutiva Crônica/terapia , Doença Pulmonar Obstrutiva Crônica/tratamento farmacológico , Atenção à Saúde , Justiça Social , ViolênciaRESUMO
OBJECTIVE: To explore racially minoritized families' perceptions on how, and if, physicians should address children's racial identity and concepts of racism within clinical settings. STUDY DESIGN: Parents of racially minoritized children, ages 5 through 18, were interviewed to explore experiences with racial identity formation, discrimination, and the extent to which they wanted pediatricians to address these topics. Children were included at the discretion of their parents. Interviews were transcribed, coded, and analyzed through a critical race theory lens based in constructivist grounded theory. RESULTS: Parents encouraged their children to embrace their racial identities but also wanted to shield them from negative experiences of racism to preserve identity safety. Parents felt pediatricians should address racial issues in a manner specific to their child's situation. Thoughtful inclusion of race-related questions, whether in discussion or on questionnaires, is essential to prevent tension in a therapeutic relationship. There was no consensus on the use of preclinical screening. Instead, families highlighted the importance of embracing humility, trust, and respect. CONCLUSIONS: Participant families have preferences for approaches to address the effects of racism on their children's health. Pediatricians should understand the importance of identity safety and approach their discussions with cultural humility, which includes self-reflection, empathy, active listening, and flexible negotiation. Above all, pediatricians need to create a safe environment for appropriate discussion of these issues.
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Chronic hepatitis B infection (CHB) affects 300 million people worldwide and is being targeted by the United Nations 2030 Sustainable Development Goals (SDGs) and the World Health Organisation (WHO), working towards elimination of hepatitis B virus (HBV) as a public health threat. In this piece, we explore the evidence and potential impact of peer support to enhance and promote interventions for people living with CHB. Peer support workers (PSWs) are those with lived experience of an infection, condition or situation who work to provide support for others, aiming to improve education, prevention, treatment and other clinical interventions and to reduce the physical, psychological and social impacts of disease. Peer support has been shown to be a valuable tool for improving health outcomes for people living with human immunodeficiency virus (HIV) and hepatitis C virus (HCV), but to date has not been widely available for communities affected by HBV. HBV disproportionately affects vulnerable and marginalised populations, who could benefit from PSWs to help them navigate complicated systems and provide advocacy, tackle stigma, improve education and representation, and optimise access to treatment and continuity of care. The scale up of peer support must provide structured and supportive career pathways for PSWs, account for social and cultural needs of different communities, adapt to differing healthcare systems and provide flexibility in approaches to care. Investment in peer support for people living with CHB could increase diagnosis, improve retention in care, and support design and roll out of interventions that can contribute to global elimination goals.
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Hepatite B Crônica , Grupo Associado , Apoio Social , Humanos , Hepatite B Crônica/terapia , Hepatite B Crônica/psicologiaRESUMO
BACKGROUND: Although internal medicine (IM) physicians accept public advocacy as a professional responsibility, there is little evidence that IM training programs teach advocacy skills. The prevalence and characteristics of public advocacy curricula in US IM residency programs are unknown. OBJECTIVES: To describe the prevalence and characteristics of curricula in US IM residencies addressing public advocacy for communities and populations; to describe barriers to the provision of such curricula. DESIGN: Nationally representative, web-based, cross-sectional survey of IM residency program directors with membership in an academic professional association. PARTICIPANTS: A total of 276 IM residency program directors (61%) responded between August and December 2022. MAIN MEASUREMENTS: Percentage of US IM residency programs that teach advocacy curricula; characteristics of advocacy curricula; perceptions of barriers to teaching advocacy. KEY RESULTS: More than half of respondents reported that their programs offer no advocacy curricula (148/276, 53.6%). Ninety-five programs (95/276, 34.4%) reported required advocacy curricula; 33 programs (33/276, 12%) provided curricula as elective only. The content, structure, and teaching methods of advocacy curricula in IM programs were heterogeneous; experiential learning in required curricula was low (23/95, 24.2%) compared to that in elective curricula (51/65, 78.5%). The most highly reported barriers to implementing or improving upon advocacy curricula (multiple responses allowed) were lack of faculty expertise in advocacy (200/276, 72%), inadequate faculty time (190/276, 69%), and limited curricular flexibility (148/276, 54%). CONCLUSION: Over half of US IM residency programs offer no formal training in public advocacy skills and many reported lack of faculty expertise in public advocacy as a barrier. These findings suggest many IM residents are not taught how to advocate for communities and populations. Further, less than one-quarter of required curricula in public advocacy involves experiential learning.
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BACKGROUND: Op-ed writing can be a powerful and accessible advocacy tool for physicians, but training is lacking in undergraduate medical education. AIM: To train and engage first-year medical students in op-ed writing. SETTING: Midwestern research-intensive medical school. PARTICIPANTS: All students in a required first-year health policy course in 2021 and 2022. PROGRAM DESCRIPTION: For their health policy course's final assignment, students could opt to write an op-ed on a healthcare issue of their choice. All students received written instruction on op-ed writing. Additionally, they could access a seminar, coaching and editing by peers and faculty, and publication guidance. PROGRAM EVALUATION: Of 179 students over 2 years, 105 chose to write op-eds. Fifty-one attended the seminar, 35 attended peer coaching sessions, 33 accessed structured peer editing, and 23 received faculty assistance. Thirty-eight students submitted a total of 42 op-eds for publication. Twenty-two pieces were published in major outlets and 17 in the university's health policy review. Of the 22 in major outlets, 21 received editing from either peers or faculty. DISCUSSION: An op-ed writing curriculum can be integrated into an existing medical school health policy course, resulting in a high level of engagement and in published op-eds by medical students.
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Currículo , Educação de Graduação em Medicina , Estudantes de Medicina , Redação , Humanos , Educação de Graduação em Medicina/métodos , Política de Saúde , Defesa do Paciente/educaçãoRESUMO
BACKGROUND: Typically, researchers and clinicians determine the agenda in sarcoma research. However, patient involvement can have a meaningful impact on research. Therefore, the Patient-Powered Research Network (PPRN) of the Sarcoma Patient Advocacy Global Network (SPAGN) set up a Priority Setting Partnership (PSP). The primary objective of this partnership is to identify priorities for research and patient advocacy topics. METHODS: In the first phase of this PSP, including 264 sarcoma patients and carers from all over the world, 23 research topics regarding sarcomas and 15 patient advocacy topics were identified using an online survey. In the second phase, participants were asked to fill in a top five and a top three of research and patient advocacy topics, respectively. Additionally, sociodemographic characteristics and sarcoma characteristics were collected. Social media channels, local national patient advocacy groups and the SPAGN website were used to distribute the survey. RESULTS: In total, 671 patients (75%) and carers (25%) participated in this survey. The five highest ranked research topics were related to causes of sarcoma (43%), prognosis and risk of recurrence (40%), specific subtypes of sarcoma (33%), the role of immunotherapy, targeted therapy and combined therapy (30%), and hereditary aspects (30%). The three highest ranked patient advocacy topics were improving the diagnostic process of sarcoma (39%), access to tumor DNA analysis (37%) and establishing an international sarcoma registry (37%). CONCLUSIONS: This sarcoma PSP has identified priorities for research and patient advocacy, offering guidance for researchers, assisting funding agencies with assessing project relevance and empowering patient advocates to represent the needs of patients and carers.
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Cuidadores , Defesa do Paciente , Sarcoma , Humanos , Sarcoma/terapia , Feminino , Masculino , Cuidadores/psicologia , Pessoa de Meia-Idade , Adulto , Inquéritos e Questionários , Pesquisa Biomédica , Idoso , Participação do Paciente , Adulto JovemRESUMO
Rare diseases (RDs) are defined as diseases that affect a low number of the population. Prenatal diagnoses of RDs can add a lot of unique stress for parents. For example, parents who have prenatal diagnoses experience not only grief of expectation, but are forced to become patient advocates with incomplete information as their child is not yet born, and in many cases parents experience a lot of uncertainty. This typically involves seeking support groups and finding pre- and postnatal specialists all which come with mental and financial cost. Here we discuss the importance of targeted patient resources for parents to help alleviate some of their stress. Patient advocacy organizations can be incredibly useful for parents to navigate the complex healthcare system and help mitigate feelings of isolation, especially when parents can talk to others in a similar situation. We collaborated with a patient organization to create a prenatal parent support guide to address how parental needs such as mental well-being and practicing self-care can be met. We hope that resources such as these can help empower those with a pregnancy affected with a RD diagnosis.
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Doenças Fetais , Doenças Raras , Feminino , Humanos , Gravidez , Pais , Diagnóstico Pré-Natal , Doenças Raras/diagnóstico , Grupos de AutoajudaRESUMO
Asian American and Pacific Islanders (AAPI) are the fastest growing racial group in the United States. Data on AAPI communities, however, are significantly limited. The oversimplification and underreporting of this ethnically and socioeconomically heterogenous population through the use of aggregated data has deleterious effects and worsens disparities in patient treatment, outcomes, and experiences. Gynecologic oncology disparities do not exist in a vacuum, and are rooted in larger cultural gaps in our understanding and delivery of healthcare. In this paper, we aim to demonstrate how AAPI data inequities have negative downstream effects on research and public health policies and initiatives, and also provide a call to action with specific recommendations on how to improve AAPI data equity within these realms.
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OBJECTIVE: To develop and psychometrically evaluate an adapted version of the Female Self-Advocacy in Cancer Survivorship (FSACS) Scale in men with a history of cancer. METHODS: This psychometric instrument development and validation study used a two-phase approach to first adapt the FSACS Scale items to reflect the experience of men with a history of cancer and then evaluate the psychometric properties of the adapted scale compared to the original FSACS Scale. The study was conducted from December 2018 through April 2022 through cancer clinics, patient registries, and national advocacy organizations. We evaluated scale reliability and validity using reliability coefficients, exploratory and confirmatory factor analyses, and item analyses to determine a final set of scale items. RESULTS: Item responses from N = 171 men with a history of cancer were evaluated to determine scale validity. After removing poor-performing items based on item-level analyses, factor analyses confirmed that a 3-factor structure of both the adapted and original FSACS Scale best fit the scale. The 10 new items did not outperform the original 20-item scale and were therefore excluded from the final scale. The final 20-item scale explained 87.94% of item variance and subscale's Cronbach α varied from 0.65 to 0.86. CONCLUSION: The SACS Scale can be used in research and clinical contexts to assess the propensity of men and women to get their needs, values, and priorities met in the face of a challenge.
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Sobreviventes de Câncer , Neoplasias , Humanos , Masculino , Feminino , Reprodutibilidade dos Testes , Inquéritos e Questionários , PsicometriaRESUMO
The European Federation of Neurological Associations (EFNA) brings together European umbrella organizations of pan-European neurological patient advocacy groups (www.efna.net) and strives to improve the quality of life of people living with neurological conditions and to work towards relieving the immense social and economic burden on patients, carers and society in general. This article provides an overview of EFNA's activities and achievements over the past two decades, the evolution of patient advocacy during those years, and the increased role and impact of the European patient voice in the neurological arena.
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BACKGROUND: Clinical guidelines and scientific data increasingly support the appropriate use of cardiovascular magnetic resonance (CMR) . The extent of CMR adoption across the United States (US) remains unclear. This observational analysis aims to capture CMR practice patterns in the US. METHODS: Commissioned reports from the Society for Cardiovascular Magnetic Resonance (SCMR), pre-existing survey data from CMR centers, and socioeconomic and coronary heart disease data from the Centers for Disease Control and Prevention were used. The location of imaging centers performing CMR was based on 2018 Medicare claims. Secondary analysis was performed on center-specific survey data from 2017-2019, which were collected by members of the SCMR US Advocacy Subcommittee for quality improvement purposes. The correlation between the number of imaging centers billing for CMR services per million persons, socioeconomic determinants, and coronary heart disease epidemiology was determined. RESULTS: A total of 591 imaging centers billed the Center for Medicare & Medicaid Services for CMR services in 2018 and 112 (of 155) unique CMR centers responded to the survey. In 2018, CMR services were available in almost all 50 states. Minnesota was the state with the highest number of CMR centers per million Medicare beneficiaries (52.6 centers per million), and Maine had the lowest (4.4 per million). The total density of CMR centers was 16 per million for US Medicare beneficiaries. Sixty-eight percent (83 of 112) of survey responders were cardiologists, and 28% (31/112) were radiologists. In 72% (71/112) of centers, academic health care systems performed 81%-100% of CMR exams. The number of high-volume centers (>500 scans per year) increased by seven between 2017 and 2019. In 2019, 53% (59/112) of centers were considered high-volume centers and had an average of 19 years of experience. Centers performing <50 scans had on average 3.5 years of experience. Approximate patient wait time for a CMR exam was 2 weeks to 1 month. CONCLUSION: Despite increasing volume and availability in almost all 50 states, CMR access remains geographically variable. Advocacy efforts to improve access and innovations that reduce imaging time and exam complexity have the potential to increase the adoption of CMR technology.
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Peer advocacy can promote HIV protective behaviors, but little is known about the concordance on prevention advocacy(PA) reports between people living with HIV(PLWH) and their social network members. We examined prevalence and correlates of such concordance, and its association with the targeted HIV protective behavior of the social network member. Data were analyzed from 193 PLWH(index participants) and their 599 social network members(alters). Kappa statistics measured concordance between index and alter reports of PA in the past 3 months. Logistic and multinomial regressions evaluated the relationship between advocacy concordance and alter condom use and HIV testing behavior and correlates of PA concordance. Advocacy concordance was observed in 0.3% of index-alter dyads for PrEP discussion, 9% for condom use, 18% for HIV testing, 26% for care engagement, and 49% for antiretroviral use discussions. Fewer indexes reported condom use(23.5% vs. 28.1%;[Formula: see text]=3.7, p=0.05) and HIV testing(30.5% vs. 50.5%; [Formula: see text]=25.3, p<0.001) PA occurring. Condom advocacy concordance was higher if the index and alter were romantic partners(OR=3.50; p=0.02), and lower if the index was 10 years younger than the alter(OR=0.23; p = 0.02). Alters had higher odds of using condoms with their main partner when both reported condom advocacy compared to dyads where neither reported advocacy(OR=3.90; p<0.001) and compared to dyads where only the index reported such advocacy(OR = 3.71; p=0.01). Age difference and relationship status impact advocacy agreement, and concordant perceptions of advocacy are linked to increased HIV protective behaviors. Alters' perceptions may be crucial for behavior change, informing strategies for improving advocacy.
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Receiving peer advocacy has been shown to result in increased HIV protective behaviors, but little research has gone beyond assessment of the mere presence of advocacy to examine aspects of advocacy driving these effects. With baseline data from a controlled trial of an advocacy training intervention, we studied characteristics of HIV prevention advocacy received among 599 social network members of persons living with HIV in Uganda and the association of these characteristics with the social network members' recent HIV testing (past six months) and consistent condom use, as well as perceived influence of advocacy on these behaviors. Participants reported on receipt of advocacy specific to HIV testing and condom use, as well as on measures of advocacy content, tone of delivery, support for autonomous regulation, and perceived influence on behavior. Receiving HIV testing advocacy and condom use advocacy were associated with recent HIV testing [65.2% vs. 51.4%; OR (95% CI) = 1.77 (1.11-2.84)], and consistent condom use with main sex partner [19.3% vs. 10.0%; OR (95% CI) = 2.16 (1.12-4.13)], respectively, compared to not receiving advocacy. Among those who received condom advocacy, perceived influence of the advocacy was positively correlated with consistent condom use, regardless of type of sex partner; support of autonomous regulation was a correlate of consistent condom use with casual sex partners, while judgmental advocacy was a correlate of consistent condom use with serodiscordant main partners. Among those who received testing advocacy, HIV testing in the past 6 months was positively correlated with receipt of direct support for getting tested. In multiple regression analysis, perceived influence of both HIV testing and condom use advocacy were positively correlated with advocacy that included access information and support of autonomous regulation; confrontational advocacy and judgmental advocacy were independent positive correlates of perceived influence of testing and condom use advocacy, respectively. These findings support associations that suggest potential benefits of peer advocacy from PLWH on HIV testing and condom use among their social network members, and indicate that advocacy content, tone of delivery, and support of autonomous regulation advocacy may play an important role in the success of advocacy.
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Preservativos , Infecções por HIV , Teste de HIV , Grupo Associado , Parceiros Sexuais , Apoio Social , Humanos , Uganda , Preservativos/estatística & dados numéricos , Masculino , Feminino , Infecções por HIV/prevenção & controle , Infecções por HIV/psicologia , Adulto , Teste de HIV/estatística & dados numéricos , Parceiros Sexuais/psicologia , Defesa do Paciente , Pessoa de Meia-Idade , Conhecimentos, Atitudes e Prática em Saúde , Adulto Jovem , Comportamento Sexual , Sexo SeguroRESUMO
OBJECTIVE: To assess for improvement in comfort in participating in advocacy for migraine and headache disorders and knowledge needed for successful advocacy. BACKGROUND: The Advocacy Connection Team (ACT)-Now program is an educational program offered through Miles for Migraine, a non-profit advocacy organization. It is designed to teach headache fellows and patients advocacy skills. METHODS: In a cross-sectional pre-test-post-test design, the 2021 ACT-Now cohort of 98 participants were administered a set of 11 pre-course survey questions identifying their role (healthcare provider/headache fellow or patient/caregiver), baseline knowledge of migraine-related disability and stigma, and baseline engagement and comfort with advocating. The post-course survey questions were the same as the pre-course questions, with the addition of one question assessing knowledge of migraine-related disability, additional questions addressing comfort levels advocating with insurance and policymakers, as well as creating an advocacy plan. RESULTS: For the pre-course survey, 69 participants responded and for the post-course survey, 40 participants responded. Compared to the pre-course survey, participants were able to correctly identify epidemiological data about migraine following the ACT-Now course (pre-course 46% correct, post-course 58% correct, p = 0.263). There was also an increase in the comfort level of participants in advocacy activities, including the creation of an advocacy action plan (pre-course 23% were "very comfortable" advocating, post-course 63%, p < 0.05). CONCLUSION: These results demonstrate that ACT-Now is effective at improving advocacy skills in a mixed cohort of patients and headache fellows, giving them the skills to create advocacy plans and engage with other patients and physicians, payers, and policymakers to create a more understanding, equitable and compassionate world for persons with migraine and other headache diseases.
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Transtornos de Enxaqueca , Defesa do Paciente , Humanos , Defesa do Paciente/educação , Estudos Transversais , Feminino , Masculino , Transtornos de Enxaqueca/terapia , Adulto , Cuidadores/educação , Pessoa de Meia-Idade , Transtornos da Cefaleia/terapia , Bolsas de Estudo , Conhecimentos, Atitudes e Prática em SaúdeRESUMO
BACKGROUND: Stigmatization and trivialization of headache confront individuals with headache disorders, but the degree to which media may contribute is incompletely understood. OBJECTIVE: The objective of this study was to quantify the frequency of disparaging metaphorical use of the words "headache" and "migraine" in articles and summaries of major publications. METHODS: This longitudinal study analyzed a dataset of 1.3 million articles and summaries written by authors and editors of 38 major publications. Data cover written publications from 1998 up to 2017. The use of the words "headache" or "migraine" in articles and summaries by major publications was rated by two authors (P.Z. and A.V.) as either "metaphorical" or "medical" based on their contextual application. Pearson's chi-squared test was applied to assess differences in the frequency of metaphorical use of "headache" in comparison to "migraine." Secondary outcomes were the source of publication and time of publication. RESULTS: A total of 6195 and 740 articles included the words "headache" or "migraine," respectively; 7100 sentences contained the word "headache" and 1652 sentences contained the word "migraine." Among a random sample of 1000 sentences with the word "headache," there was a metaphorical use in 492 (49.2% [95% CI, 46.1-52.3]) sentences. Among a random sample of 1000 sentences with the word "migraine," there was a metaphorical use in 45 (4.5% [95% CI, 3.2-5.8]) sentences. The five most prevalent sources were CNN, Fox News, The New York Times, The Guardian, and The Washington Post. There was an overall increase in the number of articles containing the words "headache" or "migraine" from database inception until analysis (1998 up to 2017). The database included no articles containing either "headache" or "migraine" in 1998; in 2016, this number was 1480 articles. CONCLUSIONS: In this longitudinal study, major publications applied a metaphorical use of "headache" about half of the time. The metaphorical use of "headache" is 11-fold greater than the metaphorical use of "migraine" in the same media sample. These depictions may contribute to the trivialization of headache and the stigmatization of individuals with headache disorders. Studies with individuals affected by headache disorders are needed to clarify potential influences.
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Transtornos da Cefaleia , Transtornos de Enxaqueca , Humanos , Estudos Longitudinais , Transtornos de Enxaqueca/epidemiologia , Transtornos de Enxaqueca/complicações , Cefaleia/epidemiologia , Cefaleia/complicações , Transtornos da Cefaleia/complicações , Projetos de PesquisaRESUMO
Epilepsy affects approximately 25 % of people with intellectual disability (ID). Despite this high prevalence, evidence of health disparity exists in healthcare access and health outcomes for this population. Patients with ID experience additional challenges in accessing appropriate epilepsy care, and are at greater risk of experiencing inappropriate prescribing, polypharmacy and misdiagnosis compared with the general population. The expectations, attitudes and actions of physicians are key in addressing health inequalities, particularly those which disproportionately impact a specific group of patients, such as patients with ID and epilepsy. This qualitative study aimed to explore the views of specialist physicians as to why they believe this patient group are at a disadvantage when it comes to accessing appropriate epilepsy care, and how physicians can intervene to ensure that patients with ID are given equal access to suitable epilepsy care, and equal opportunity to achieve the best possible treatment outcomes. Semi-structured interviews were carried out with six physicians, located in six countries, who specialise in the care of persons with ID who have epilepsy. Interviews sought views on prognostic expectations, experiences of disparities in epilepsy care, and suggestions for advocacy interventions. Interviews were analysed using reflexive thematic analysis. Three core themes and nine subthemes were identified. Core themes included (1) 'Nervousness in care and treatment,' which reflected participants' descriptions of a nervousness by colleagues when treating epilepsy in patients with ID. (2) 'Taking a deeper dive' captured the harmful effects of accepting "common dogma," as well as the issue of a lack of clarity around treatment pathways for patients with epilepsy and ID. (3) 'Teach me' illustrated the importance of shared expertise, reflective practice and continued research and advocacy. Findings reflected participants' recommendations to address disparities in epilepsy care for patients with ID. These recommendations highlighted education and training, taking time to learn how to communicate in different ways, and regular reflection on personal assumptions and biases as important contributors to addressing inequalities in epilepsy care for patients with ID. It is hoped that findings will prompt those providing epilepsy care to reflect on their own practice and identify ways in which they might intervene to minimise inadvertent harm and reduce health disparities in epilepsy care for patients with ID.
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Epilepsia , Deficiência Intelectual , Humanos , Deficiência Intelectual/epidemiologia , Deficiência Intelectual/terapia , Papel do Médico , Epilepsia/diagnóstico , Epilepsia/epidemiologia , Epilepsia/terapia , Atenção à Saúde , Inquéritos e QuestionáriosRESUMO
A 2023 product recall has described the risk for morbidity and mortality for children ingesting water beads. We aimed to describe water bead exposure and management trends in the United States. We used the National Electronic Injury Surveillance System (NEISS) to identify water bead injuries from 2013 to 2023. Inclusion criteria were ages 0-17 years, diagnosis of ingested object/foreign body, and the narrative word(s) suggested water bead(s). NEISS supplied weights and variance variables to generate national estimates. There were 226 water bead injuries (66% ingestion). Children under age 2 years comprised 29% of injuries. Multiple water beads were involved in 56% of cases. There was a significant uptrend in water bead injury frequency after 2020. Sixteen (7%) cases required escalation of care. Water bead injuries are rising and appear to affect children of all ages. Children aged less than 5 years appear most vulnerable.