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This study investigates the relationship between institutional blockholder coordination, proxied by geographic proximity, and climate change risk disclosure. Using a sample of 2,887 firm-year observations for S&P 500 companies from 2010 to 2022, we reveal that a firm's climate change risk disclosure decreases when its institutional blockholders are more coordinated. In addition, we find that the negative relationship between institutional blockholder coordination and climate change risk disclosure manifests more in firms with less diversified institutional blockholders, a smaller number of institutional blockholders, a prominent position to their blockholders, and more dedicated institutional blockholder ownership. Moreover, we find that the negative association between institutional blockholder coordination and climate change risk disclosure is more pronounced in firms with corporate general counsels, a non-concentrated customer base, higher asset tangibility, and those that are environmentally sensitive. Our main conclusion still holds after using an alternative measure for climate change risk disclosure as well as a battery of endogeneity tests. Finally, we propose that institutional blockholder coordination lessens climate change risk disclosure through the channel of increased performance-induced CEO dismissal. Collectively, this study provides insightful implications for academics, financial statement users, regulators, and policymakers.
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BACKGROUND: Isolated rapid eye movement sleep behavior disorder (iRBD) is associated with an increased risk of Parkinson's disease and other synucleinopathies. There is no consensus about disclosure of this risk to patients with iRBD. OBJECTIVE: The objective of our study was to assess the experiences of risk disclosure in a group of patients with iRBD and their views on what, when, and how this should be done. METHODS: A survey was administered to patients with iRBD to explore their experiences and views on risk disclosure. RESULTS: Thirty-one patients with iRBD (28 males; mean age, 70 [SD 8.7] years; mean disease duration, 8.7 [SD 6.4] years) were included. A third reported they had not been informed about the link between iRBD and other conditions by clinicians at diagnosis, but 90% would have liked to have received prognostic information, and 60% indicated that this should happen at the point that iRBD was diagnosed. Most participants wanted this information to come from the clinician diagnosing and treating iRBD (90.3%). Almost three-quarters (72.2%) had searched for this information online. CONCLUSIONS: Patients with iRBD mostly wished to have received information regarding the potential implications of iRBD when the diagnosis was made. © 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.
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Doença de Parkinson , Transtorno do Comportamento do Sono REM , Sinucleinopatias , Masculino , Humanos , Idoso , Transtorno do Comportamento do Sono REM/diagnóstico , Transtorno do Comportamento do Sono REM/complicações , Revelação , Polissonografia , Doença de Parkinson/complicações , Doença de Parkinson/diagnóstico , Doença de Parkinson/epidemiologiaRESUMO
INTRODUCTION: The aim of our study was to find out the opinion of patients with Parkinson's Disease (PD) whose disease was preceded by REM sleep behaviour disorder (RBD) regarding early information about the high risk of phenoconversion in RBD. CLINICAL RATIONALE FOR THE STUDY: RBD is an early clinical manifestation of α-synucleinopathies with a more than 90% risk of phenoconversion to PD, dementia with Lewy bodies (DLB) or multiple system atrophy (MSA). It remains a subject for debate as to whether and how RBD patients should be informed about the high risk of phenoconversion. The patient's right to full knowledge regarding his or her health conflicts with the potentially destructive impact of this information on his or her mental state and quality of life of them and their relatives. MATERIAL AND METHODS: Thirty-nine patients with PD whose disease was preceded by RBD were surveyed. Data on the course of RBD and PD was collected. Questions were asked about early information about the high risk of phenoconversion to patients with RBD and factors determining the opinion of the surveyed persons. RESULTS: The majority ( > 60%) of respondents gave a positive answer when asked whether patients should be informed about their high risk of developing PD once diagnosed with RBD. Only a few (7.7%) respondents believed that disclosing such information to the patient should be possible only after obtaining his or her consent. Respondents associated consent to information about the high risk of developing PD in people with RBD with high expectations of the healthcare system. We were unable to determine whether factors such as the gender of the subject, the clinical course of the PD, and the RBD duration had an impact on patients' opinions regarding disclosing knowledge about phenoconversion. CONCLUSIONS AND CLINICAL IMPLICATIONS: Our study provides important information that should influence physicians' communication with patients with RBD, especially regarding how they communicate about the high risk of phenoconversion.
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Atrofia de Múltiplos Sistemas , Doença de Parkinson , Transtorno do Comportamento do Sono REM , Masculino , Feminino , Humanos , Doença de Parkinson/diagnóstico , Transtorno do Comportamento do Sono REM/etiologia , Transtorno do Comportamento do Sono REM/diagnóstico , Qualidade de Vida , Atrofia de Múltiplos Sistemas/diagnósticoRESUMO
BACKGROUND: Mild cognitive impairment (MCI) is a condition that exists between normal healthy ageing and dementia with an uncertain aetiology and prognosis. This uncertainty creates a complex dynamic between the clinicians' conception of MCI, what is communicated to the individual about their condition, and how the individual responds to the information conveyed to them. The aim of this study was to explore clinicians' views around the assessment and communication of MCI in memory clinics. METHOD: As part of a larger longitudinal study looking at patients' adjustment to MCI disclosure, we interviewed Old Age Psychiatrists at the five participating sites across Scotland. The study obtained ethics approvals and the interviews (carried out between Nov 2020-Jan 2021) followed a semi-structured schedule focusing on [1] how likely clinicians are to use the term MCI with patients; [2] what tests clinicians rely on and how much utility they see in them; and [3] how clinicians communicate risk of progression to dementia. The interviews were voice recorded and were analysed using reflective thematic analysis. RESULTS: Initial results show that most clinicians interviewed (Total N = 19) considered MCI to have significant limitations as a diagnostic term. Nevertheless, most clinicians reported using the term MCI (n = 15/19). Clinical history was commonly described as the primary aid in the diagnostic process and also to rule out functional impairment (which was sometimes corroborated by Occupational Therapy assessment). All clinicians reported using the Addenbrooke's Cognitive Examination-III as a primary assessment tool. Neuroimaging was frequently found to have minimal usefulness due to the neuroradiological reports being non-specific. CONCLUSION: Our study revealed a mixture of approaches to assessing and disclosing test results for MCI. Some clinicians consider the condition as a separate entity among neurodegenerative disorders whereas others find the term unhelpful due to its uncertain prognosis. Clinicians report a lack of specific and sensitive assessment methods for identifying the aetiology of MCI in clinical practice. Our study demonstrates a broad range of views and therefore variability in MCI risk disclosure in memory assessment services which may impact the management of individuals with MCI.
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Disfunção Cognitiva , Psiquiatria , Cognição , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/epidemiologia , Humanos , Estudos Longitudinais , Neuroimagem , Testes NeuropsicológicosRESUMO
For as long as knowledge asymmetry continues to be deemed the defining characteristic of the lay-professional relationship, the courts' delineation of obligations meant to address lay vulnerability will too frequently end up compounding the layperson's non-epistemic, 'sense of self' vulnerability. The proposed re-conceptualisation of professional responsibility calls for reform on several fronts: among these, an expanded 'duty to consult' (beyond do-not-resuscitate-orders) is uniquely placed as a justiciable criterion capable of addressing such a situational, 'sense of self' vulnerability.
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BACKGROUND: Impressive progress in the understanding of the prodromal phase of Parkinson's disease (PD) in recent years has enabled the generation of disease prediction models. However, a remaining diagnostic uncertainty and lack of therapeutic options for affected individuals has resulted in a variety of ethical issues that have not to date been addressed sufficiently. Moreover, differences in the specificity of prodromal symptoms and possible subtypes of PD, especially the presence of rapid eye movement (REM) sleep behavior disorder (RBD), may have an important impact on prognostic counseling. OBJECTIVES: To derive a guideline for risk disclosure in prodromal PD based on the current literature and expert opinion. METHODS: We performed (1) a literature review on prognostic counseling in PD and (2) consulted with international experts on prodromal PD using a semi-structured questionnaire based on a Delphi approach to evaluate recommendations for risk disclosure in PD. RESULTS: The literature research revealed only 11 publications addressing prognostic counseling, with only two studies directly addressing affected individuals and most studies focusing on risk disclosure in RBD. The expert survey revealed the importance of distinguishing between individuals with and without RBD in prognostic counseling. CONCLUSIONS: Based on the current literature and expert recommendations, a guideline for risk disclosure in prodromal PD for clinical care and research could be elaborated. Prognostic counseling should include differentiation between individuals with and without RBD, taking into account the high uncertainty of risk calculation in RBD-negative prodromal PD. © 2021 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.
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Doença de Parkinson , Transtorno do Comportamento do Sono REM , Revelação , Humanos , Doença de Parkinson/diagnóstico , Sintomas Prodrômicos , Prognóstico , Transtorno do Comportamento do Sono REM/diagnósticoRESUMO
Over time, medical law has moved away from paternalism in favour of an approach grounded in patients' rights. Using Montgomery v Lanarkshire Health Board (2015) as a case study, we offer a deeper analysis of this emerging approach. We argue that patients' rights should be evaluated in terms of their contribution to making medical law more socially responsive, by developing it to give effect to social needs and aspirations pertaining to health care. Although rights can play an important role in achieving social responsiveness, they also carry the risk of entrenching approaches unrepresentative of patients' actual needs and empirical realities. This is evident in Montgomery, where the law, despite being derived from General Medical Council (GMC) guidance, has effects that differ significantly from the GMC's goals. Drawing on socio-legal literature, we outline a new approach for guiding the use of rights in medical law focused on the functional consequences of rights in facilitating patients' aspirations, and the capacity of rights to respond to social and institutional contexts in which medical interaction occurs. We conclude by showing how this approach, applied to informed consent, would produce a different and arguably a superior duty, providing a sounder basis for responding to patient needs.
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Tomada de Decisão Compartilhada , Jurisprudência , Direitos do Paciente/ética , Direitos do Paciente/legislação & jurisprudência , Responsabilidade Social , Revelação , Consentimento Livre e Esclarecido , Objetivos Organizacionais , Autonomia Pessoal , Relações Médico-PacienteRESUMO
The current study examined the effects of framing in promotional health messages on intention to vaccinate against seasonal influenza virus. The findings of an experimental study (N = 86) indicated that exposure to both benefits and side effects of vaccination (gain-framed with risk disclosure message) led to lower intention to receive the flu vaccine. This relationship was mediated by both perceived vaccine efficacy and felt ambivalence in a serial order, revealing the underlying psychological mechanisms important for understanding health-related behaviors. Theoretical implications of constructing sub-framed messages are discussed and the concept of second-order framing is introduced.
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Promoção da Saúde/organização & administração , Vacinas contra Influenza/administração & dosagem , Influenza Humana/prevenção & controle , Intenção , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Revelação , Feminino , Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Promoção da Saúde/normas , Humanos , Vacinas contra Influenza/efeitos adversos , Vacinas contra Influenza/imunologia , Masculino , Medição de Risco , Adulto JovemRESUMO
The literature shows that the prominence of risk disclosure influences consumer responses to direct-to-consumer advertising of prescription drugs. However, little is known about the psychological process whereby disclosure prominence exerts its influences on health beliefs and behavior. Based on a review of the literature on health cognition and behavior, the current study proposed and tested a model to show that risk disclosure prominence affects consumers' drug choice intention through the mediating roles of awareness of drug adverse reactions (ARs), perceived control over ARs, and perceived risk of ARs. The findings were discussed in terms of their theoretical and managerial implications.
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Cognição , Publicidade Direta ao Consumidor/métodos , Revelação , Percepção , Medicamentos sob Prescrição/efeitos adversos , Adolescente , Adulto , Idoso , Feminino , Comportamentos Relacionados com a Saúde , Humanos , Intenção , Masculino , Pessoa de Meia-Idade , Medicamentos sob Prescrição/uso terapêutico , Medição de RiscoRESUMO
BACKGROUND: Whether knowledge of genetic risk for coronary heart disease (CHD) affects health-related outcomes is unknown. We investigated whether incorporating a genetic risk score (GRS) in CHD risk estimates lowers low-density lipoprotein cholesterol (LDL-C) levels. METHODS AND RESULTS: Participants (n=203, 45-65 years of age, at intermediate risk for CHD, and not on statins) were randomly assigned to receive their 10-year probability of CHD based either on a conventional risk score (CRS) or CRS + GRS ((+)GRS). Participants in the (+)GRS group were stratified as having high or average/low GRS. Risk was disclosed by a genetic counselor followed by shared decision making regarding statin therapy with a physician. We compared the primary end point of LDL-C levels at 6 months and assessed whether any differences were attributable to changes in dietary fat intake, physical activity levels, or statin use. Participants (mean age, 59.4±5 years; 48% men; mean 10-year CHD risk, 8.5±4.1%) were allocated to receive either CRS (n=100) or (+)GRS (n=103). At the end of the study period, the (+)GRS group had a lower LDL-C than the CRS group (96.5±32.7 versus 105.9±33.3 mg/dL; P=0.04). Participants with high GRS had lower LDL-C levels (92.3±32.9 mg/dL) than CRS participants (P=0.02) but not participants with low GRS (100.9±32.2 mg/dL; P=0.18). Statins were initiated more often in the (+)GRS group than in the CRS group (39% versus 22%, P<0.01). No significant differences in dietary fat intake and physical activity levels were noted. CONCLUSIONS: Disclosure of CHD risk estimates that incorporated genetic risk information led to lower LDL-C levels than disclosure of CHD risk based on conventional risk factors alone. CLINICAL TRIAL REGISTRATION: URL: http://www.clinicaltrials.gov. Unique identifier: NCT01936675.
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LDL-Colesterol/sangue , Doença das Coronárias/genética , Idoso , Ansiedade/epidemiologia , Comorbidade , Doença das Coronárias/sangue , Doença das Coronárias/epidemiologia , Doença das Coronárias/psicologia , Tomada de Decisões , Gorduras na Dieta , Feminino , Seguimentos , Aconselhamento Genético , Predisposição Genética para Doença , Genótipo , Humanos , Inibidores de Hidroximetilglutaril-CoA Redutases/uso terapêutico , Masculino , Pessoa de Meia-Idade , Minnesota/epidemiologia , Atividade Motora , Participação do Paciente , Relações Médico-Paciente , Polimorfismo de Nucleotídeo Único , Probabilidade , Medição de Risco , Fatores de RiscoRESUMO
Little is known about individuals' motivation, perception, and treatment beliefs towards the use of genetic information in risk estimates for coronary heart disease (CHD). In this study, participants at intermediate 10-year risk of CHD were randomized to receive either their estimated conventional risk score (CRS) alone, or a CRS and a genetic risk score (GRS), by a genetic counselor. Surveys on motivation to participate in and perception of genetic testing for CHD were administered at 3 months and treatment beliefs at 6 months following risk disclosure. Survey responses used Likert scales. Linear and logistic regression were used for analysis. Overall, motivation to participate in genomic clinical trials was favorable and did not differ between the CRS and GRS groups (16.95 ± 0.82 vs. 17.58 ± 0.83, p = 0.091), but participants who initially received their GRS indicated a greater desire to find ways to improve health as a reason for participation (OR: 0.53 (95%CI: 0.29, 0.94), p = 0.028). Perception of genetic testing was also favorable in both groups (15.29 ± 0.39 vs. 15.12 ± 0.40, p = 0.835). Participants who initially received their GRS were more inclined to recommend genetic testing to family and friends (9.95 ± 1.88 vs. 10.52 ± 2.17, p = 0.023). In the MI-GENES study, motivation to participate in and perception of genetic testing among study participants were overall favorable. Genetic risk disclosure was associated with increased motivation to recommend genetic testing to family and friends.
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Revelação , Testes Genéticos/métodos , Infarto do Miocárdio/genética , Infarto do Miocárdio/psicologia , Adulto , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Motivação , Infarto do Miocárdio/prevenção & controle , Medição de Risco/métodos , Fatores de RiscoRESUMO
Based on a survey of prescription drug users (N = 408), this study revealed that: (a) the frequency of consumers' personal experience of prescription medicine adverse reactions negatively related to the extent of their optimistic bias about the chances of such events, (b) consumers' perceived personal control over adverse reactions positively related to optimistic bias, and (c) optimistic bias related more negatively to intentions to seek risk information when consumer skepticism toward direct-to-consumer advertising was high. When skepticism was low to average, optimistic bias did not inhibit such intentions. Implications and recommendations for the practice of direct-to-consumer advertising are provided.
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Publicidade Direta ao Consumidor/métodos , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/psicologia , Comportamento de Busca de Informação , Otimismo/psicologia , Adolescente , Adulto , Idoso , Atitude Frente a Saúde , Feminino , Humanos , Intenção , Masculino , Pessoa de Meia-Idade , Percepção , Adulto JovemRESUMO
The expectations of patients enhance the probability of their occurrence and are thereby the main triggers for inducing placebo and nocebo responses. Strong placebo effects are not only regularly observed in pharmaceutical and non-pharmaceutical sham treatment in placebo controlled studies but also make a considerable contribution to any real treatment. The accompanying words are essential to ensure maximum impact of drugs and other forms of treatment. They should contain positive expressions instead of negations. Such a strengthening of drug therapy by placebo effects is more important than the widespread use of placebos that remains a problem because of the obligation to provide information and effective therapy and because of inherently induced side effects. Any false comments about symptoms or side effects can aggravate or induce them. Nocebo effects are not imagined but real symptoms that can definitely be harmful. They constitute a considerable proportion of the side effects requiring treatment. Awareness and knowledge is needed to prevent or neutralize them. Nocebo effects are avoidable when risk information is always directly combined with positive aspects, such as the expected benefits of the treatment or the prophylactic measures and therapeutic options for side effects. Existing negative expectations are disrupted by providing more alternative options and by leaving negative experiences in the past where they belong. Placebo and nocebo effects are strongly sensitive to the context. They are dependent on the experiences and conceptions of the individual patient, as well as on the physician-patient relationship. The latter can provide the best protection against harm from risk disclosure. In addition, the expectations of patients and their consequences are strongly affected by the expectations of the treating doctor, by fellow patients, the media and society.
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Efeito Nocebo , Efeito Placebo , Placebos/uso terapêutico , Analgésicos/efeitos adversos , Analgésicos/uso terapêutico , Ética Médica , Humanos , Transtornos de Enxaqueca/tratamento farmacológico , Relações Médico-Paciente/ética , Placebos/efeitos adversos , Fatores de Risco , Triazóis/efeitos adversos , Triazóis/uso terapêutico , Triptaminas/efeitos adversos , Triptaminas/uso terapêuticoRESUMO
BACKGROUND: Informed consent is a continuous process of communication with the patient and not merely the signing of a form. The Irish Medical Council's Guide to Good Practice and Ethics state that no part of the consent process should be delegated to an intern unless the procedure is a minor with which the intern is very familiar and all relevant information has first been explained to the intern. AIMS: We aimed to evaluate whether practices regarding interns and consent had changed in the past five years. METHODS: An anonymous Google Forms survey was distributed to interns from all intern networks between 24-August and 26-November 2021. RESULTS: Of 854 interns, there were 147(17.2%) survey responses. 129(87.8%) participants had consented for a procedure. 111(86%) responded that they had consented for procedures that they had not witnessed before. 92(71.3%) reported that their medical supervisor did not explain procedures to them prior to obtaining consent. 128(99.2%) of interns were not usually observed by a more senior doctor when obtaining consent. 116(89.9%) were expected to obtain consent from patients on a regular basis, with 78(60.5%) feeling pressured into doing so on at least one occasion. Results were largely unchanged compared to when the same survey was circulated in 2016. CONCLUSIONS: Interns remain routinely involved in the consent process without adequate training or supervision. This is unfair on our most junior doctors and on patients. Steps must be taken to ensure the IMC guidance is adhered to and this deficiency must be highlighted to Senior Clinicians.
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Internato e Residência , Médicos , Humanos , Consentimento Livre e Esclarecido , Inquéritos e Questionários , PacientesRESUMO
The ability to identify individuals in the prodromal phase of Parkinson's disease has improved in recent years, raising the question of whether and how those affected should be informed about the risk of future disease. Several studies investigated prognostic counselling for individuals with isolated REM sleep behavior disorder and have shown that most patients want to receive information about prognosis, but autonomy and individual preferences must be respected. However, there are still many unanswered questions about risk disclosure or early diagnosis of PD, including the impact on personal circumstances, cultural preferences and specific challenges associated with different profiles of prodromal symptoms, genetic testing or biomarker assessments. This narrative review aims to summarize the current literature on prognostic counselling and risk disclosure in PD, as well as highlight future perspectives that may emerge with the development of new biomarkers and their anticipated impact on the definition of PD.
An important goal of Parkinson's disease research is to diagnose the disease at an earlier stage, even before the typical motor symptoms appear, in the so-called 'prodromal phase'. Currently, there are no treatments available that can slow down or prevent disease progression in this early phase, even though many of the early symptoms are treatable. This raises ethical questions about whether people want to know their future risk of Parkinson's and, if so, how this information should be given. This article summarizes the current state of knowledge, but also open questions about risk disclosure in the prodromal phase of Parkinson's. Previous studies have shown that many people with early symptoms of Parkinson's would like to know their risk, but that the individual's wish to know (or not to know) must first be ascertained and respected. Future studies need to find out whether very early diagnosis of Parkinson's might have an impact on people affected, for example in terms of psychological stress or anxiety, and whether cultural background might influence attitudes to risk disclosure. Furthermore, it is expected that in the future it will be possible to make an early diagnosis of Parkinson's using specific new techniques, e.g., by testing spinal fluid. It is of utmost importance to find out if and how test results of these new techniques should be communicated to patients, even if they do not lead to direct medical treatment.
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Doença de Parkinson , Sintomas Prodrômicos , Humanos , Doença de Parkinson/diagnóstico , Diagnóstico Precoce , Prognóstico , Aconselhamento/éticaRESUMO
Introduction: In the response to and prevention and control of the Novel coronavirus pneumonia, the COVID-19 vaccine does not provide lifelong immunity, and it is therefore important to increase the rate of booster shots of the COVID-19 vaccine. In the field of information health science, research has found that information frames have an impact in changing individual attitudes and health behaviors. Objective: This study focuses on the effects of different influencing factors on the public's willingness to receive the booster shots of the COVID-19 vaccine under two information frameworks. Methods: An online questionnaire was conducted to explore the effects of demographic characteristics, personal awareness, social relationships, risk disclosure, perceived booster vaccination protection rate, and duration of protection under the assumption of an information framework. T test and one-way analysis were used to testing the effect of variables. Results: (1) The persuasion effect under the gain frame is higher than that under the loss frame (B = 0.863 vs. B = 0.746); (2) There was no significant difference in subjects' intention of booster vaccination in terms of gender, age, income, occupation, educational background and place of residence. Whether family members received booster vaccination was strongly correlated with their intention of vaccination under the loss framework (p = 0.017, M = 4.63, SD = 0.664). (3) The higher the understanding of COVID-19, the higher the degree of compliance with the government's COVID-19 prevention and control measures, and the higher the willingness to strengthen vaccination; (4) Risk disclosure has a significant impact on people's willingness to receive COVID-19 booster shots (M = 2.48, under the loss framework; M = 2.44, under the gain framework); (5) Vaccine protection rate and duration of protection have an impact on people's willingness to vaccinate. Increased willingness to vaccinate when the protection rate of booster vaccine approaches 90% (M = 4.76, under the loss framework; M = 4.68, under the gain framework). When the vaccine protection period is 2 years, people are more willing to receive a booster vaccine; and the willingness to receive a booster shot is stronger under the loss framework (M = 4.60, SD = 0.721, p = 0.879). Conclusion: The impact of the information framework on COVID-19 vaccination intentions is different, and the disclosure of relevant health information should focus on the impact of the information framework and content on the public's behavior toward strengthening vaccination. Therefore, in the face of public health emergencies, public health departments, healthcare institutions, and other sectors can consider adopting the Gainful Information Framework tool to disseminate health information to achieve better persuasion and promote public health behavior change enhancing public health awareness, and promoting universal vaccination.
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Vacinas contra COVID-19 , COVID-19 , Humanos , Intenção , COVID-19/prevenção & controle , Vacinação , ChinaRESUMO
OBJECTIVES: Hereditary cancer risks can be effectively managed if at-risk relatives enroll in surveillance and preventive care. Family-mediated risk disclosure has internationally been shown to be incomplete, selective and leave over a third of eligible at-risk individuals without access to genetic counseling. We explored patients handling of cancer risk information in practice. METHODS: We conducted twelve semi-structured interviews with patients who had completed their genetic counseling and been asked to disclose risk information to relatives. Questions were designed to investigate lived experiences of communicating hereditary risk and focused on disclosure strategies, intrafamilial interactions and emotional responses. RESULTS: Qualitative content analysis yielded five categories. These span personal fears, shared responsibilities, feeling of empowerment, innovative solutions and unmet needs. Patients put high value on collaboration with their genetic healthcare professionals but also solicited better overview of the counseling process and more personalized, case-tailored information. CONCLUSIONS: Our results add novel insights about the practical strategies employed by genetic counselees and their motivations behind disclosing hereditary risk information to relatives. PRACTICE IMPLICATIONS: A patient-centered cancer genetics care would clarify roles and responsibilities around risk disclosure, inform counselees about the process upfront and tailor information to offer case-specific data with the family's inheritance pattern explained.
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Família , Aconselhamento Genético , Predisposição Genética para Doença , Entrevistas como Assunto , Neoplasias , Pesquisa Qualitativa , Humanos , Feminino , Suécia , Masculino , Pessoa de Meia-Idade , Adulto , Família/psicologia , Neoplasias/psicologia , Neoplasias/genética , Idoso , Revelação da Verdade , Revelação , Comunicação , Testes GenéticosRESUMO
INTRODUCTION: In the absence of a disease-modifying treatment and prognostic uncertainty, ethics of risk disclosure in prodromal Parkinson's disease (PD) is challenging. Previous studies highlighted several facets of these challenges from the perspective of involved parties. However, to date, the view of neurologists who may encounter individuals with prodromal PD remained unrepresented. Moreover, cross-cultural differences intrinsic to the ethics of risk disclosure are yet to be elucidated. Therefore, we investigated the attitude of neurologists toward risk disclosure in prodromal PD. METHODS: In this observational study, Turkish neurologists were invited to fill out a questionnaire evaluating their stance on risk disclosure regarding an individual with polysomnography-confirmed REM sleep behavior disorder, which is the strongest risk factor for PD. RESULTS: More than 90% of the participating 222 neurologists were familiar with prodromal PD. While 15.3% stated that the risk should be disclosed in any case, 6.8% chose no disclosure. The remaining 77.9% favored disclosure only under certain circumstances, the plurality of which was the individual's consent to know about the risk. After reminding the potential neuroprotective effects of exercise and diet, neurologists who chose the option of "no disclosure" decreased to 3.2% (McNemar's test p = 0.008). No significant differences among the neurologists were found regarding sex, academic title, or field of interest. CONCLUSION: The majority of the neurologists found it appropriate to disclose the risk of future PD only if the individual expresses a desire to know. Also, recognition of the impact of lifestyle factors on PD is important in prognostic counseling.
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Doença de Parkinson , Transtorno do Comportamento do Sono REM , Humanos , Doença de Parkinson/diagnóstico , Doença de Parkinson/complicações , Neurologistas , Transtorno do Comportamento do Sono REM/etiologia , Prognóstico , Inquéritos e Questionários , Sintomas ProdrômicosRESUMO
BACKGROUND: Familial hypercholesterolemia (FH) is an autosomal dominant monogenic disease characterized by high low-density lipoprotein cholesterol (LDL-C) levels. Although carrying causative FH variants is associated with coronary heart disease (CHD), it remains unclear whether disclosing its associated cardiovascular risk affects outcomes in patients with FH. OBJECTIVE: We aimed to evaluate the efficacy of providing future cardiovascular risk based on genetic testing in addition to a standard FH education program. METHODS: We conducted a randomized, wait-list controlled, open-label, single-center trial. In the intervention group, we reported a future cardiovascular risk based on the genetic testing adding to standard FH education at week 0. In the wait-list control group, we only disseminated standard FH education according to the guidelines at week 0; they later received a genetic testing-based cardiovascular risk assessment at week 24. The primary endpoint of this study was the plasma LDL-C level at week 24. RESULTS: Fifty eligible patients with clinically diagnosed FH, without a history of CHD, were allocated to the intervention group (n = 24) or the wait-list control group (n = 26). At week 24, the intervention group had a significantly greater reduction in LDL-C levels than the wait-list control group (mean changes, -13.1 mg/dL vs. 6.6 mg/dL; difference, -19.7 mg/dL; 95% confidence interval, -34 to -5.6; p = 0.009). This interventional effect was consistent with FH causative variant carriers but not with non-carriers. CONCLUSIONS: In addition to standard FH care, providing future cardiovascular risk based on genetic testing can further reduce plasma LDL-C levels, particularly among FH causal variant carriers. REGISTRATION: Japan Registry of Clinical Trials (jRCTs04218002). URL: https://jrct.niph.go.jp/latest-detail/jRCTs042180027.