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BACKGROUND: and purpose: In France, women lack information to make a shared decision to start breast cancer screening. Decision aids are useful to facilitate this discussion, yet few meet international standards. The objective of this project was to build, validate and measure the quality of a decision aid for organized breast screening in France, in line with international standards, intended for both women and healthcare professionals. MATERIALS AND METHODS: This mixed-methods study was conducted between January 2017 and June 2022. The prototype was developed from a qualitative study, systematic review and targeted literature review and alpha tested during two Delphi rounds. Readability was evaluated with the Flesch score and content with International Patient Decision Aid Standards Instrument (IPSASi). RESULTS: An online decision aid, accessible at www.Discutons-mammo.fr, written in French was developed. The content included eligibility, information about breast screening the advantages and disadvantages of screening, patient preferences and a patient-based discussion guide using text, infographics, and videos. The Flesch readability test score was 65.4 and the IPDASi construct quality score was 176 out of 188. CONCLUSIONS: This decision aid complies with IPDASi standards and could help women eligible for breast screening in France make a shared decision with a specialized healthcare professional about whether or not to participate in organized breast screening.
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Neoplasias da Mama , Técnicas de Apoio para a Decisão , Feminino , Humanos , Tomada de Decisões , Neoplasias da Mama/diagnóstico , Detecção Precoce de Câncer/métodos , Participação do Paciente/métodosRESUMO
Background: Oral anticoagulants generate a burden of care that can affect the patient's quality of life. The concept of treatment's burden measures the impact of medical care for the patient's quality of life. Various factors can exacerbate the burden. Several studies have assessed the satisfaction of patients treated with oral anticoagulants. Objective: This study has assessed the burden of patients treated with oral anticoagulants. Methods: An analytical cross-sectional study of patients recruited from pharmacies in the Loire. A questionnaire was carried out using the anti-clot treatment scale, assessing satisfaction, and the Zarit scale, assessing the burden on carers of demented patients. Results: Anticoagulants were a burden for 41% (n = 158) of the 389 responding patients. Anticoagulants' burden was higher when oral anticoagulant was responsible for side effects, anxiety or lifestyle changes. Conclusion: The patients could be satisfied with the benefit of the treatment, satisfied with its practical modalities, and describe modifications of lifestyle habits contributing to the burden of the treatment.
Introduction: Les anticoagulants oraux génèrent une charge de soins pouvant impacter la qualité de vie des patients. Le fardeau du traitement mesure l'impact de la prise en charge médicale sur la qualité de vie. Des facteurs divers peuvent aggraver le fardeau. Plusieurs études ont évalué la satisfaction des patients traités par anticoagulants oraux. Objectif: Cette étude a évalué le fardeau des patients traités par anticoagulants oraux. Méthode: Étude transversale analytique menée auprès de patients recrutés dans des pharmacies ligériennes. Un questionnaire a été réalisé à partir de l'échelle échelle anti-clot treatment scale évaluant la satisfaction et de l'échelle Zarit évaluant le fardeau des aidants de patients déments. Résultats: Les anticoagulants étaient un fardeau pour 41 % (n = 158) des 389 répondants. Le fardeau des anticoagulants était plus important lorsque l'AO était responsable d'effets secondaires, d'angoisse ou modifiait leurs habitudes de vie. Conclusion: Les patients interrogés pouvaient être convaincus du bénéfice du traitement, satisfaits de ses modalités pratiques, et décrire un fardeau du traitement.
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Fibrilação Atrial , Humanos , Fibrilação Atrial/tratamento farmacológico , Qualidade de Vida , Estudos Transversais , Anticoagulantes/efeitos adversos , Inquéritos e Questionários , Administração OralRESUMO
BACKGROUND: Since the revision of the french law in 2016, artificial hydration is considered as a treatment and its withdrawal is part of the fight against extraordinary treatment at the end of life. Given its symbolism, the decision of withdrawal can be difficult for the patient, his or her entourage, and caregivers. The objective of this study was to assess the benefits and risks associated with artificial hydration (AH) at the end of life and the existing means of communication around this decision. METHOD: Systematic review of the literature from the Pubmed® search engine, between 2011 and 2021, in French or English by four researchers. RESULTS: Among the 102 articles identified, the eleven studies included were in favor of no effect of AH on the quality and duration of survival. A reduction in AH appeared to reduce symptoms related to fluid overload and may be related to better quality of end of life or dying. Dry mouth was the most recurrent discomfort associated with AH reduction or discontinuation. Regular mouth care could prevent this discomfort. A clinical trial with patient education seemed to increase indecision about stopping AH. CONCLUSION: Despite the lack of good quality studies, the benefit-risk balance of AH does not seem to favour its continuation. Communication tools such as videos or multidisciplinary programs could reduce the decisional conflict of patients, their families and caregivers.
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Assistência Terminal , Cuidadores , Comunicação , Morte , Feminino , Hidratação/efeitos adversos , Humanos , MasculinoRESUMO
Vaccine hesitancy (VH) is defined as "delaying or refusing a secure vaccine despite its availability". This hesitancy affects caregivers and more specifically nurses. The purpose of this study is to assess determinants of influenza VH in the nurse's community. We conducted a systematic review of qualitative literature according to criteria of Preferred Reporting Items for Systematic Review and Meta-Analysis and Enhancing Transparency in Reporting the synthesis of Qualitative Research from 2009 until October 2020. Eleven qualitative studies analysed (ten thematic content analyses and one grounded theory method) found three main factors in VH. The first determinant was the benefit-risk equation considered as unfavourable due to an ineffective vaccine and fears about adverse effects as the pain of the injection. Wrong immunological beliefs brought into hesitancy. Disease barriers (hand washing and masks) and personal immunity were regarded as more effective than the vaccine. Lastly, dehumanised vaccination and the difficulties of access to healthcare were institutional determinants. Nurses ask for a vaccine promotion by hierarchy and doctors with transparent information and respect for autonomy. The availability of vaccines and methods of pain control seem to be some tracks to reduce nurses' VH.
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BACKGROUND: In 2020, the number of new cancer cases was estimated at 20 490 862 worldwide up from 18.1 million in 2018 and 14.1 million in 2012. Since the 2000s, cancer treatments have significantly improved, allowing either a cure or control of the disease. Patients share their experience of the disease and use supportive care solutions through involvement in patient associations and online forums. All the associations were built on the principle of "peer support," which is based on mutual aid between people who suffer or have suffered from the same somatic or psychological illness or had the same life experience. This experiential knowledge can be explored to understand the role of peers and associations in the appropriation of their cancer. METHODS: A qualitative phenomenological study was undertaken through semi-structured interviews with 12 participants. Interviews were audio-recorded, transcribed verbatim, then analyzed by means of triangulation up to the point of theoretical saturation by a semio-pragmatic method. RESULTS: Four categories emerged: (1) "Transforms a painful experience into a positive one. It mobilizes the human values of sharing, love, and humility, which facilitates resilience"; (2) "The characteristics of the association, a non-medical place between people sharing a common destiny, resonates with patients' needs and improves their well-being"; (3) "The association transforms the patients' experiences by facilitating engagement that leads to a patient-expert (empowerment)"; and (4) "Understanding what is happening to them is soothing, reassuring, because patients' concerns need to be heard and their care understood". CONCLUSIONS: This study highlights patient associations can serve as the mediator of NPI and facilate the empowerment of breast cancer patients. PRACTICE IMPLICATIONS: Educating health professionals in initial and continuing education about non-pharmacological interventions will be a major issue. Teaching the patient-centred approach to health professionals is one of the priorities in initial and continuing medical education.
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Neoplasias da Mama , Neoplasias da Mama/terapia , Aconselhamento , Feminino , Pessoal de Saúde , Humanos , Grupo Associado , Pesquisa QualitativaRESUMO
OBJECTIVE: Breast cancer screening decision aids (DAs) are designed to help women decide whether or not to participate in mammography-based programmes. We aimed to explore women's and healthcare professionals' expectations of a breast cancer screening DA, as part of the French DEDICACES study. METHODS: This French qualitative study was based on semistructured, individual interviews with women from the general population, general practitioners (GPs), midwives, gynaecologists, radiologists and screening centre managers. Sampling was purposive and used diversification criteria. The inductive analysis was based on grounded theory. RESULTS: Between April 2018 and May 2019, we interviewed 40 people: 13 women, 14 GPs, 4 gynaecologists, 3 midwives, 3 radiologists and 3 screening centre managers. The women and the healthcare professionals considered that a DA could help to improve levels of knowledge, harmonise medical practice and provide reliable, comprehensive information. Overall, the interviewees wanted an easy-to-use, intuitive, graphic-rich, interactive, computer-based, patient-centred DA. Use of the DA might be limited by a lack of familiarity with shared decision-making (SDM), the risk of misuse and a preference for asymmetric positive information. CONCLUSION: The present results are likely to facilitate the development of the first validated tool for SDM support in French breast cancer screening programmes.
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Neoplasias da Mama , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/prevenção & controle , Tomada de Decisões , Técnicas de Apoio para a Decisão , Atenção à Saúde , Detecção Precoce de Câncer/métodos , Feminino , França , Humanos , Pesquisa QualitativaRESUMO
CONTEXT: In France, breast cancer has been the most commonly diagnosed and the most lethal cancer in women. The risk-benefit ratio of organized breast cancer screening has been the focus of much scientific controversy, especially about overdiagnosis. A citizen conference and some scientific organizations have asked for a better education for women. The aim of this study was to analyze the numerous decision support tools and other information media, both in form and in substance. METHODS: A review of the existing publications has been done by 4 researchers between 2006 and 2016. Original articles included, in French or in English, focused on information media or decision aid tools for organized screening without any restriction on the type of studies. RESULTS: The 69 articles included in this review have shown that a better education of the patients was not related to an increase in the will to take part or in the actual participation in screening. The information media (pamphlet, video ) does not appear to have any influence on those ratios. The participants like having a discussion with a trained interviewer. In a third of the studies, the population was included on ethnic and social criteria. 8 studies focused on overdiagnosis. CONCLUSION: This review underlines the importance of repeated interviews, as a support for shared decision making. Specific interactions (such as patient navigator) could help to reduce social health inequalities. The patients should be informed about the current uncertainty regarding the ratio of overdiagnosis.
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Scientific controversies on breast cancer screening have induced the French authorities to launch online citizen consultation. The objective of this netnography was to identify the knowledge and values underlying contributors' choices. The choice of supporters was often based on emotions: impression of disease severity and efficacy of screening, fearfulness stemming from personal experience and testimony from relatives. Opponents emphasized the risks of the screening and the doctors' perceived lack of relational and technical skills. The 'non-decision' profile was explained by information deemed simplistic, guilt-inducing and partial. Future research should focus on how to appeal to emotions to support shared decision.
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Neoplasias da Mama , Neoplasias da Mama/diagnóstico , Tomada de Decisões , Detecção Precoce de Câncer , Feminino , Humanos , Programas de Rastreamento , Encaminhamento e ConsultaRESUMO
A 57-year-old female experienced two successive peripheral facial paralysis (PFP) episodes following influenza immunization in 2009 and 2016 with two different vaccines. The similarity of chronology and semiology between the two events and the absence of alternative etiology plead for intrinsic accountability. Extrinsic accountability relies on previous case reports of PFP related to flu vaccination (26 cases in the French pharmacovigilance database and 4 cases in the medical literature).
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Paralisia Facial/induzido quimicamente , Vacinas contra Influenza/efeitos adversos , Influenza Humana/prevenção & controle , Vacinação/efeitos adversos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fatores de TempoRESUMO
CONTEXT: In France, breast cancer has been the most commonly diagnosed and the most lethal cancer in women. The risk-benefit ratio of organized breast cancer screening has been the focus of much scientific controversy, especially about overdiagnosis. A citizen conference and some scientific organizations have asked for a better education for women. The aim of this study was to analyze the numerous decision support tools and other information media, both in form and in substance. METHODS: A review of the existing publications has been done by 4 researchers between 2006 and 2016. Original articles included, in French or in English, focused on information media or decision aid tools for organized screening without any restriction on the type of studies. RESULTS: The 69 articles included in this review have shown that a better education of the patients was not related to an increase in the will to take part or in the actual participation in screening. The information media (pamphlet, video ) does not appear to have any influence on those ratios. The participants like having a discussion with a trained interviewer. In a third of the studies, the population was included on ethnic and social criteria. 8 studies focused on overdiagnosis. CONCLUSION: This review underlines the importance of repeated interviews, as a support for shared decision making. Specific interactions (such as patient navigator) could help to reduce social health inequalities. The patients should be informed about the current uncertainty regarding the ratio of overdiagnosis.