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Introducción: promover autonomía significa transitar desde un modelo paternalista hacia uno que posi-cione en un rol activo a las personas durante el encuentro clínico, con participación en la toma de deci-siones relativas al cuidado de su salud. Este artículo describe la percepción de usuarios que viven con multimorbilidad respecto del ejercicio de su autonomía durante la atención clínica. Método: estudio de caso cualitativo en usuarios con multimorbilidad atendidos en un centro de salud familiar de Santiago (Chile).Se realizó análisis de contenido según Krippendorf. Resultados: la muestra quedó conformada por 19 participantes adultos con un promedio de 2.7 condiciones crónicas de salud. Del análisis de contenido de las entrevistas emergieron tres categorías: a) significado atribuido por los usuarios a la autonomía en la atención de salud, b) elementos que debe considerar una atención en salud que respete la autonomía del usuario y c) participación durante la atención clínica. Conclusiones: frente al aumento de las condicio-nes crónicas de salud es imperativo repensar la forma de brindar atención de salud, relevando el valor de la participación usuaria a través de la toma de decisiones compartida como expresión de respeto de su autonomía y una forma de fomentar el cuidado centrado en las personas
Aim: Promoting autonomy means changing from a paternalistic model to one in which individuals play an active role in their healthcare, which their participation in medical decision-making will reflect. This issue needs to be sufficiently explored in Chile, so this article aims to describe the perception of users liv-ing with multimorbidity regarding their ability to exercise autonomy in clinical care. Method: Qualitative case study conducted in a sample of patients with multimorbility from a family health center in Santiago de Chile. Content analysis was performed according to the Krippendorf method. Results: The sample com-prised 19 adult participants with an average of 2.7 chronic health conditions. Three categories emerged from the content analysis of the interviews: (a) Meaning attributed by users to autonomy in health care, (b) Elements that health care respecting user autonomy should consider, and (c) Participation during clinical care. Conclusions: Considering the sustained increase in chronic health conditions, it is impera-tive to rethink how health care is provided, highlighting the value of user participation through shared decision-making as an expression of respect for individuals' autonomy and the promotion of patient-cen-tered care
Objetivo: promover a autonomia significa passar de um modelo paternalista para um que posicione as pessoas num papel ativo durante o encontro clínico, com participação na tomada de decisões relaciona-das com os seus cuidados de saúde. Este manuscrito descreve a percepção de usuários que convivem com multimorbidade quanto ao exercício de sua autonomia durante o atendimento clínico. Método: estudo de caso qualitativo em usuários com multimorbidade atendidos em um Centro de Saúde da Família de Santiago, no Chile. A análise de conteúdo foi realizada segundo Krippendorf. Resultados: a amostra foi composta por 19 participantes adultos com média de 2.7 condições crônicas de saúde. Da análise de conteúdo das entrevistas emergem três categorias: a) Significado atribuído pelos usuários à autonomia no cuidado em saúde, b) Elementos que um cuidado de saúde que respeite a autonomia do usuário deve considerar, e c) Participação durante o atendimento clínico. Conclusões: face ao aumento das condições crónicas de saúde, é imperativo repensar a forma de prestar cuidados de saúde, destacando o valor da participação dos pacientes através da tomada de decisão partilhada como expressão de respeito pela sua autonomia e forma de promover o cuidado centrado nas pessoas
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Humanos , Chile , EnfermedadRESUMEN
Objective To explore the effects of the multiple shared decision-making mode using a decision aid manual in conjunction with online labor and delivery decision support on the delivery mode for pregnant women with a scarred uterus.Methods A total of 94 women with scarred uterus who received prenatal care at a tertiary hospital from September 2019 to October 2022 were enrolled and assigned to experimental and control groups using the random number table method.The control group received standard prenatal education,and the experimental group received multiple shared decision-making interventions in addition to standard prenatal education.The degree of conflict in decision-making for delivery,preference for delivery mode,postpartum decision regret,and the final delivery mode between the two groups were compared,respectively.Results Following the multiple shared deci-sion intervention,decision conflict scores in the experimental group were significantly reduced(P<0.001).In the survey on delivery mode preferences,there was a reduction in the number of individuals in the experimental group expressing"uncertainty",and an increase in those choosing vaginal delivery.Ultimately,in the experimental group,30 women(68.2%)underwent cesarean sections,and 14(31.8%)had vaginal deliveries.The level of post-decision regret in the experimental group was lower than that in the control group(P<0.001).Conclusions Multiple shared decision-making for women pregnant with a scarred uterus could reduce the level of decision-making conflict,increase the willingness for vaginal delivery,and assist them in making rational and scientifically informed decisions regarding childbirth.
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The shared decision marking between doctors and patients is a moral requirement,which stems from the basic rights of medical staff to accept patients or their families,such as autonomy,informed consent and choice.In order to achieve the shared decision marking between doctors and patients,medical staff and patients play different roles.The task of medical staff is to introduce professional knowledge and specific experience,provide patients with multiple recommendations for diagnosis and treatment choices,and the task of patients is to choose treatment plans recognized in the shared decision marking based on their understanding of medical and ethical knowledge such as treatment goals,health values,and basic rights.From the ethical perspective,based on the shared decision marking between doctors and patients,this study deeply analyzes its ethical significance.Centering on the basic requirements of ethics,this study explores various practical models such as the doctor-patient joint participation model,the doctor-patient-family joint participation model,the doctor-nurse-patient joint participation model,the high-risk case conversation model of medical intervention,and the multidisciplinary team collaboration model from multiple perspectives and depths,to further promote the implementation of the shared decision marking between doctors and patients and to provide some reference basis.
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Introduction: Epileptic patients have a higher risk of death than healthy individuals. Advance care planning (ACP) is also important for epileptic patients, but is not well recognized. We experienced two cases in which ACP was performed by family and medical staff for epileptic patients with intellectual disability. Case1: The patient was a 29-year-old male. It was important to continue spending his daily life as he currently did. Although his family wanted to provide palliative care at the end of life, there were no decisions about which medical interventions may not work at his end of life. It was decided that the family and medical staff would continue to make shared decision making. Case2: The patient was an 18-year-old female. It was important to continue spending her daily life as she currently did. Her family and medical team decided to provide palliative care at the end of life. Based on the opinions of the family members in both cases, the importance and widespread use of ACP in epileptic patients were obtained. Conclusions: ACP enabled families and medical staff to make shared decisions about what is best for epileptic patients with intellectual disability. ACP for epileptic patients seems to need to be promoted.
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To explore the barriers and facilitators of shared decision making, 23 clinicians were selected for semi-structured interviews by purpose sampling and convenience sampling with phenomenological methods in qualitative research, and 7-step of Colaizzi was used to analyze the interview data. Three themes and twelve subthemes were extracted, included: individual factors of doctors (role cognition, perceived outcomes, communication skills, clinical expertise, cognitive bias) , individual factors of patients (general information, lack of disease knowledge, willingness to participate in decision making) and environmental factors (clinical situation, social environment, resources and social influence) . There were many barriers and facilitators in the implementation of doctor-patient shared decision making. It is necessary to scientifically analyze and actively deal with the influence of each factor, and find reasonable countermeasures to promote the clinical implementation of shared decision making.
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O rastreamento mamográfico destina-se a mulheres assintomáticas e é essencial informá-las sobre os seus benefícios e riscos, dentre os quais a exposição à radiação ionizante. O objetivo desse artigo é analisar como a informação sobre o risco da radiação no rastreamento mamográfico é apresentada em materiais de comunicação em saúde para as mulheres. Foi realizada uma análise documental de materiais informativos de sites governamentais e de repositório de ferramentas de apoio à decisão. Foram avaliados 11 sites governamentais, 128 endereços eletrônicos, 100 imagens e 12 ferramentas de apoio à decisão e selecionados 14 materiais para análise. Observou-se pouca informação sobre os riscos da exposição à radiação e tendência a ressaltar os benefícios do rastreamento. A forma de apresentar o risco foi variada e poucos o quantificam. Reconhece-se a dificuldade implícita a essa temática e a importância de se considerar o letramento em cada contexto. Contudo, é preciso ampliar a comunicação com a mulher sobre o rastreamento do câncer de mama, na atenção primária à saúde, valorizando a tomada de decisão compartilhada com o profissional de saúde como princípio ético a ser assegurado.
Mammographic screening is aimed at asymptomatic women and it is essential to inform them about its benefits and risks, including exposure to ionizing radiation. The purpose of this article is to analyze how information on radiation risk in mammography screening is presented in health communication materials for women. A documentary analysis on materials from government websites and from a decision aids repository was carried out. A total of 11 governmental websites, 128 electronic addresses, 100 images and 12 decision support tools were evaluated and 14 materials were selected for analysis. There was little information on risks of radiation exposure and a tendency to emphasize the benefits of screening. The way of presenting the risk was varied and few quantified it. The difficulty implicit in this theme and the importance of considering literacy in each context are recognized. However, it is necessary to increase communication with women about breast cancer screening, in primary health care, valuing shared decision-making with the health professional as an ethical principle to be ensured.
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Constructing a doctor-patient community with a shared future requires efforts from both the medical supply side and the patient demand side, with special attention to the needs of patients. Continuously meeting and improving the needs of patients is the starting point, ultimate goal, and evaluation standard for constructing a doctor-patient community with a shared future. Therefore, this paper proposed the proposition of "what patients need", that is, what needs do patients have and how to meet their needs. The fundamental needs of patients are to diagnose and treat diseases and recover from illness, which are specifically manifested in the demands to narrate the disease’s feelings, the willingness to participate in medical decision-making, the experience of diagnosis and treatment in the process of medical treatment, and the satisfaction evaluation of the hospital’s performance appraisal. On the basis of clarifying the needs of patients, this paper proposed the paths and methods to meet patients’ needs, and provided new ideas for constructing a doctor-patient community with a shared future.
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Doctor-patient shared decision-making is a medical decision-making model that involves mutual interaction and communication between doctors and patients. The lack of patient’s subjectivity is mainly manifested in the departure of patients’ "subject" caused by the deviation of medical purpose and the influence of traditional culture, the weak position of patients formed by the difference in the strength of social role, the obstacle of doctor-patient communication caused by the difference of disease situation perception, etc., which has become a prominent problem hindering the development of doctor-patient shared decision-making mode. Taking the mutual subjectivity of doctors and patients as the premise, effective doctor-patient communication as the basis, and doctor-patient shared decision-making as the main axis, the construction of concentric medical care under a doctor-patient community with a shared future can help build up the subjectivity and mutual relationship between doctors and patients, and provide a path for the retrieval of patient subjectivity.
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Traditional Chinese medicine(TCM) treatment models are rich and unique, including patient-led decision-making, doctor-led decision-making, and doctor-patient shared decision-making. However, doctor-led decision-making is more common. The connotation of TCM shared decision-making is rich, including not only the smooth flow of information and the encouragement and support of equal participation by patients, but also the discussions on various aspects of diet, exercise, emotions, daily life, physiology, psychology, society, and nature that affect health based on the unique holistic concept of TCM. Integrating "shared decision-making" into the treatment process of TCM can be divided into four steps according to the process of "diagnosis and treatment". TCM shared decision-making has advantages and limitations, requiring both doctors and patients to meet certain objective conditions, and there are also special situations in TCM treatment where shared decision-making cannot be applied. Multiple ways to enhance the decision-making ability of doctors and patients, scientific evaluation and matching treatment plans, development of decision-making aids, and smooth channels for information transmission can all enhance the shared decision-making ability of doctors and patients.
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The burden of cardiovascular disease is heavy, the condition is complex, and the clinical decision-making methods are diverse. Taking coronary heart disease and implantable cardioverter defibrillator implantation as examples, this paper illustrated the shared decision-making framework in cardiovascular disease. Patient participation in diagnosis and treatment decision-making will enhance their sense of control and gain. Strategies to improve the quality of shared decision-making include developing effective decision-making aids, enhancing patients’ risk perception abilities, and empowering patients to enhance their decision-making abilities.
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The retention of emergency patients is a common problem faced by hospitals worldwide. In addition to medical problems, social, family, economic and other problems will also cause patients to stay in the emergency department. It not only brings challenges to patients’ own disease treatment and hospital operation and management, but also brings ethical dilemmas. Taking the service cases of medical social workers who involved in stranded patients in Shanghai E Hospital as an example, this paper analyzed 20 service records and interviews with social workers receiving cases, and combed the ethical dilemmas faced by medical social workers in the process of involving in emergency stranded patients. It was found that medical social workers faced many ethical dilemmas in the process of involving in emergency stranded patients, such as interpersonal relations and relevant legal regulations, the right to life and health and the right to informed consent, the self-determination of case owners and the allocation of medical resources. In this regard, it is suggested to solve the problem of patient retention by advocating the improvement of relevant systems and policies, building cooperative teams to smooth referral channels, strengthening education, and promoting family shared decision-making.
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On the basis of combing and reflecting on the literature related to doctor-patient shared decision-making, this paper proposed the necessity of discussing the ethical basis of shared decision-making from a theoretical perspective, and attempted to analyze the suitability of Aristotle’s "friendship" ideology as its ethics’ basis. At the practical level, starting from Ropohl’s technical ethics, it was recommended to establish a shared decision-making responsibility sharing system, providing methodological guidelines for the clinical application of shared decision-making.
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Objective:This paper introduces the concepts of " patient-centered cell therapy research management model", to provide reference for domestic medical institutions which conduct cell therapy clinical trials.Methods:We reviewed and summarized the experiences of conducting cell therapy at Peking University Shenzhen Hospital, including challenges and response plans regarding to the technology assessment, ethical evaluation risks and regulatory compliance. According to which, this paper aims to explore the reflections and practical experience of establishing a patient-centered, multi-stakeholder shared decision-making research management system.Results:The " patient-centered cell therapy research management model" ensures the reliability of research results through multi-stakeholder engagement in decision-making and management, adequate technical evaluation, effective ethical review and harmonized scientific research management, which not only meets the urgent health needs of the patient, but also promotes the standardized development of emerging technologies.Conclusions:The " patient-centered cell therapy research management model" is tailored for the cell therapy research, it is important to promote its further assessment and applications.
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Objective:A study was conducted about the putative links of older rural Australians'health knowledge and preparation with their quality of involvement in patient-general practitioner(GP)communication during health intake visits. Methods:It was a cross-sectional study between January 2021 and April 2022.The 32-item quality of involve-ment in communication scale was designed and incorporated into the Survey Gizmo software.This online survey was administered by sending an email request to the Renmark Rotary Club,which actively promoted this study across five rural towns in South Australia.121 participants completed the surveys.Mean-sum scores were cal-culated based on the questionnaire responses to evaluate outcomes,specifically initiation of information,active participation,and emotional expression.We employed different methods including t-tests,ANOVA,and leaner regressions to analyse data. Results:The demographic profile of participants characterised by a female predominance(58.7%,71/121),a ma-jority falling within the 65-<70 age bracket(47.1%,57/121),and a high level of educational attainment(58.7%had completed high school or higher,71/121).Additionally,35%of the participants predominantly spoke a lan-guage other than English at home.Regarding the initiation of information with GPs,the mean sum-score was(20.5±3.7),indicating a marginally above-average level of engagement.Contrarily,the active participation was suboptimal,as suggested by a mean sum score of(35.9±6.3).Furthermore,the emotional expression was rela-tively low,with a mean score of(13.9±1.8).Substantial variations were discerned in the quality of patient-GP communication,contingent upon factors such as educational background,language spoken at home,health lit-eracy,and preparatory measures for clinical visits.Participants who predominantly spoke a language other than English at home demonstrated significantly lower levels of information initiation with their GPs(P<0.001).Higher educational attainment was positively correlated with increased active participation(P<0.001).En-hanced health literacy and thorough visit preparation were significantly associated with increased levels of active participation(P<0.001). Conclusion:Meaningful engagement through recognition,empowerment,and support(health literacy pro-grams)for older rural adults is suggested for improving their quality of involvement in communication with GPs.
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Objective To systematically evaluate the effect of patient decision aids(DA)in breast cancer screening.Methods Randomized controlled trials on the efficacy of DA in breast cancer screening were searched in databases including CNKI,WanFang,VIP,SinoMed,PubMed,the Cochrane Library,Embase and Web of Science.The search period was from the establishment of the database to February 2023.Descriptive analysis was used to analyze the main contents of DA and summarize its clinical application effect.Results A total of 8 literatures were included.The quality of the included literatures were moderate,with all grades B.The results showed that DA can help patients improve their ability to make informed decisions,reduce decision regret,and promote patients'positive role in decision making.There were no significant differences in screening intention,decision conflict,and perceived risk of cancer in DA.DA had paper and online forms,including basic information support,advantages and disadvantages of breast cancer screening,and preference of patients'personal values.Conclusion DA has certain limitations,but the prospects are broad.In the future,we can learn foreign relevant theoretical achievements and develop a more comprehensive DA for breast cancer screening based on China's national conditions.
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@#BACKGROUND: Shared decision-making (SDM) has broad application in emergencies. Most published studies have focused on SDM for a certain disease or expert opinions on future research gaps without revealing the full picture or detailed guidance for clinical practice. This study is to investigate the optimal application of SDM to guide life-sustaining treatment (LST) in emergencies. METHODS: This study was a prospective two-round Delphi consensus-seeking survey among multiple stakeholders at the China Consortium of Elite Teaching Hospitals for Residency Education. Participants were identified based on their expertise in medicine, law, administration, medical education, or patient advocacy. All individual items and questions in the questionnaire were scored using a 5-point Likert scale, with responses ranging from “very unimportant” (a score of 1) to “extremely important” (a score of 5). The percentages of the responses that had scores of 4-5 on the 5-point Likert scale were calculated. A Kendall’s W coefficient was calculated to evaluate the consensus of experts. RESULTS: A two-level framework consisting of 4 domains and 22 items as well as a ready-to-use checklist for the informed consent process for LST was established. An acceptable Kendall’s W coefficient was achieved. CONCLUSION: A consensus-based framework supporting SDM during LST in an emergency department can inform the implementation of guidelines for clinical interventions, research studies, medical education, and policy initiatives.
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Objective:To construct Doctor-Nurse-Patient shared decision-making framwork for breast cancer surgery patients, so as to provide a foundation for clinical practice.Methods:The content of the shared decision-making framwork were initially constructed through systematic literature search and group discussion. From March to May 2021, 24 experts were consulted by the Delphi method, and the weight of each element would be determined by the analytic hierarchy process.Results:A total of 2 rounds of expert letter questionnaires were implemented. The authority coefficient of the experts in this study was 0.832, the Kendall coefficient of the experts in the first round was 0.130-0.261 ( P<0.01), and the Kendall coefficient of the experts in the second round was 0.130-0.272 ( P<0.01). The final shared decision-making framwork includes 5 first-level indicators, 15 second-level indicators and 52 third-level indicators. Conclusions:The Doctor-Nurse-Patient shared decision-making framwork of breast cancer surgery patients constructed in this study is scientific and practical, and provides a reference for clinical practice of shared decision-making in the future.
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Objective:To explore the influencing factors of psychological stress in patients with coronary heart disease, and the effect path of joint decision-making between doctors and patients on psychological stress and to provide reference for the formulation of management plan for physical and mental health of patients with coronary heart disease.Methods:From July 2017 to April 2022, 715 retired patients with coronary heart disease hospitalized in General Hospital of the People′s Liberation Army and Air Force Hospital in Western Military Theater of the People′s Liberation Army were investigated adopted cross-sectional survey method by simple random sampling using general information questionnaire, Stress Response Questionnaire, Shared Decision-making Questionnaire between Doctors and Patients, Uncertainty in Illness Scale and Simple Coping Style Questionnaire. By using structural equation modeling, the direct and indirect influence paths of shared decision-making between doctors and patients on psychological stress were analyzed.Results:The scores of psychological stress, shared decision-making, uncertainty in illness, positive coping style and negative coping style were 49.81 ± 11.06, 79.24 ± 8.68, 76.40 ± 12.56, 21.67 ± 5.51 and 8.90 ± 3.12. Correlation analysis showed that the scores of psychological stress were positively correlated with the scores of uncertainty in illness and negative coping style ( r=0.661, 0.591, both P<0.01), and negatively correlated with the scores of shared decision-making between doctors and patients and positive coping style ( r=-0.623, -0.451, both P<0.01). Path analysis showed that shared decision-making between doctors and patients had a direct effect on psychological stress, accounting for 23.81% of the total effect; the uncertainty in illness, positive coping style and negative coping style played a part of intermediary role between the joint decision-making between doctors and patients and psychological stress, accounting for 32.35%, 8.40% and 17.93% of the total effect respectively; the uncertainty in illness and negative coping style had a chain mediating effect between them, accounting for 17.51% of the total effect. Conclusions:It suggests that the shared decision-making between doctors and patients with coronary heart disease is not only directly related to psychological stress, but also indirectly related to psychological stress through uncertainty in illness and coping style, among which coping style may play a role of "pivot" to a certain extent.
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Abstract: Background: It is challenging to make informed decision in genetic counseling. Shared decision-making provides a chance in balancing the information and preferences between counselors and counselees. However, the status and prescriptions of shared decision-making have not been extensively studied in genetic counseling. Aim: To develop an up-to-date literature review of the shared decision-making in genetic counseling, identify knowledge gaps, and provide inspiration and suggestions for the development and practice of genetic counseling. Methods: "Genetic Counseling" and "Shared decision-making" were used to search in PubMed, Web of Science, Embase, Wanfang, CNKI and CBM databases. The search deadline was March 26, 2021. Results: A total of 22 articles were included, and four themes were identified: how people involved in genetic counseling, different stakeholders involved in SDM, multiple facilitators and barriers to SDM and the effectiveness of SDM in genetic counseling. Conclusion: Each participant needs to recognize their boundaries and make the best effort to involve in the shared decision-making. In the future, multinational studies should be considered for bringing shared decision-making to the global scale and well-designed studies are required to explore the long-term impact of shared decision-making in genetic counseling.
Resumen: Antecedentes: Es un reto tomar una decisión informada en el asesoramiento genético. La toma de decisiones compartida ofrece una oportunidad para equilibrar la información y las preferencias entre los asesores y los pacientes. Sin embargo, el estado y las prescripciones de la toma de decisiones compartida no se han estudiado ampliamente en el asesoramiento genético. Objetivo: Desarrollar una revisión bibliográfica actualizada de la toma de decisiones compartida en el asesoramiento genético, identificar las lagunas de conocimiento y proporcionar inspiración y sugerencias para el desarrollo y la práctica del asesoramiento genético. Métodos: "Genetic Counseling" y "Shared decision-making" se utilizaron para buscar en las bases de datos PubMed, Web of Science, Embase, Wanfang, CNKI y CBM. La fecha límite de búsqueda fue el 26 de marzo de 2021. Resultados: Se incluyó un total de 22 artículos y se identificó cuatro temas: cómo se involucran las personas en el asesoramiento genético, las diferentes partes interesadas involucradas en la GDS, los múltiples facilitadores y barreras para la GDS y la efectividad de la GDS en el asesoramiento genético. Conclusión: Cada participante necesita reconocer sus límites y hacer el mejor esfuerzo para involucrarse en la toma de decisiones compartida. En el futuro, se debe considerar la realización de estudios multinacionales para llevar la toma de decisiones compartida a la escala global y se requieren estudios bien diseñados para explorar el impacto a largo plazo de la toma de decisiones compartida en el asesoramiento genético.
Resumo Antecedentes: Tomar uma decisão informada em aconselhamento genético é um desafio. A tomada de decisão compartilhada (SDM) fornece uma oportunidade para contrabalançar a informação e preferências entre conselheiros e aconselhados. Entretanto, o status e prescrições da tomada de decisão compartilhada não têm sido extensivamente estudados em aconselhamento genético. Objetivo: Desenvolver uma revisão de literatura atualizada sobre a tomada de decisão compartilhada em aconselhamento genético, identificar lacunas no conhecimento e fornecer inspiração e sugestões para o desenvolvimento e prática do aconselhamento genético. Métodos: "Genetic Counseling" e "Shared decision-making" foram usados para pesquisar nos bancos de dados PubMed, Web of Science, Embase, Wanfang, CNKI e CBM. A data limite para a pesquisa foi 26 de março de 2021. Resultados: Um total de 22 artigos foram incluídos e quatro temas foram identificados: como pessoas se envolveram em aconselhamento genético, diferentes interessados envolvidos em SDM, facilitadores e barreiras múltiplas à SDM e efetividade da SDM em aconselhamento genético. Conclusão: Cada participante necessita reconhecer seus limites e fazer os melhores esforços para se envolver em tomada de decisão compartilhada. No futuro, estudos multinacionais devem ser considerados para trazer a tomada de decisão compartilhada a uma escala global e estudos bem desenhados são requeridos para explorar o impacto a longo prazo da tomada de decisão compartilhada em aconselhamento genético.