Percepción del cuidado centrado en la persona y autonomía en la atención clínica de usuarios que viven con multimorbilidad / Perception of Person-Centered Care and Autonomy in Clinical Care in Patients living with Multimorbidity / Percepção do cuidado centrado na pessoa e autonomia no cuidado clínico de usuários que convivem com multimorbidade

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

Effects of multiple shared decision-making mode on the mode of delivery for pregnancies with scarred uterus / 实用医学杂志

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.

The influencing Factors of Doctor-patient Shared Decision Making: A Qualitative Study / 中国医学伦理学

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.

Experiences of Advance Care Planning in Epileptic Patients with Intellectual Disability

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.

Comunicação com a mulher sobre a radiação no rastreamento mamográfico / Communication with women about radiation in mammographic screening

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.

Construction of Doctor-Nurse-Patient shared decision-making framwork for breast cancer patients undergoing surgery / 中国实用护理杂志

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.

Path analysis of the influence of shared decision-making between doctors and patients on psychological stress among patients with coronary heart disease / 中国实用护理杂志

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.

Reflections on the conduct of cell therapy clinical trials in medical institutes / 中华医学科研管理杂志

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.

The quality of older adults'involvement in clinical communication with general practitioners:evidence from rural towns in Australia / 《全球健康杂志（英文）》

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.

Key elements and checklist of shared decision-making conversation on life-sustaining treatment in emergency: a multispecialty study from China / 世界急诊医学杂志（英文）

@#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.